Decisions and Dealing With Them

Well, I’ve dawdled over writing this post for long enough… As of Monday we are signing Mom up for Hospice. While she meets all of the criteria for Hospice, they also agreed that, with Alzheimer’s, that situation may not be as “final” as it sounds. For example, some Alzheimer’s patients have gotten better for a time and “graduated” from Hospice. They end up going back eventually, but they are back to normal care for a while. Also they indicated that some Alzheimer’s patients decline so slowly that, what would be a 6 month process for a cancer patient, could take a year for an Alzheimer’s patient. So we are not writing Mom off any time too soon.

Hospice is apparently more than just an “end of life” medical care program. There is also, apparently, a support for the family component to the program. I’ll have more information on the services available through Hospice as I go through the process. At this point in time, I’m just focusing on making this time easier and more comfortable for my mother.

That having been said, I want to talk a bit with other caregiver’s who might read this blog. This is as good a point as any to talk about some of the things that you will be going through. I am not one to wallow publically in sorrow, though I may weep on the shoulder of a sister or a friend. That doesn’t mean that this isn’t tearing me apart. I knew this time would come. I know that Mom is no different today than she was on Thursday before they said that she qualifies for Hospice. I know these things in my head… but my heart is telling me that I’m losing her and I can’t stop it. These are normal feelings. Don’t ever let anyone tell you that you should not feel the pain or worry about what comes next. These emotions and questions are all part of the process. Accept them, but don’t wallow in them. Acknowledge their place in your world, but don’t let them overwhelm you. If you need to cry, find a quiet place to let it out, and it’s always best if you can have someone there to just remind you that it will be alright, but when you’ve cried, then stop. Go walk someplace beautiful, go shopping, go out to dinner with friends, do something that you enjoy doing and let your mind slip back into the peaceful and strong place where you need to be to give the proper love and care your loved one needs from you. You have to stay strong and take care of yourself so that you can take care of those who need you. For me, I write, I take pictures and I spend time with people I love and enjoy. I don’t have to go away to get away, but I may be unique in that way. Take time and do what YOU need to do to stay sane and patient and loving.  

And enjoy the time that you have with your loved one. Whether it’s for 6 months or year, the time will pass too quickly and you want to be able to look back and know that you filled it with love and joy.  

Long Dry Spells

My caregiver help on the weekend has a bad cold so, in compliance with the first rule of the house, she stayed home this weekend. Remember the first rule is bring no sickness into the house. That means, of course, no help through the weekend and no escaping the house, either. Then, I gave Christmas eve, today, to my weekday caregiver as a day off. Tomorrow we'll have no help for Christmas Day, so that would normally translate into a Long Dry Spell for me.

HOWEVER...

God's greatest blessings to us are the people He brings into our world. While we often overlook those blessings, I acknowledge that I am richly blessed in friends and family and they have stepped in to fill the gap. I had a dear friend come on Saturday and stay with mom for half a day while I ran some personal errands. What a gift for Christmas, Good Friends.

My sister and her family usually come down to visit with us and have Christmas dinner on Christmas day with us. This year, I told her to take the day and be with her husband's family and just relax. Mom doesn't know or care what day it is when they come to visit and those who are still aware of time should be able to celebrate it with them. So that is our plan, but to offset that my niece came down and spent most of a week with us and loved on her Grandmother. A sister from California came up the past weekend with one of my handsome nephews and spent a long weekend with us, laughing and eating and sitting beside Mom just chatting about nothing and making her smile. My sister in law, also up from CA, brought two more of the most handsome nephews in the world to visit with us for a few hours this week while they were in town on other business. They too sat sweetly beside their grandmother and repeated their names and stories for her with loving patience until she was too exhausted to stay awake. So she snoozed and dreamed happily of grandkids and happy visits. Great Christmas gifts, every one of them. And Great Blessings to Mom and me.

Today, for Christmas Eve, friends of ours are coming to spend the afternoon and stay overnight to keep us company. They will share Christmas Day with us for at least part of the day before heading back over the river and through the woods to go home for work on Wednesday. So, between my friend on Saturday and these friends for Christmas that sort of makes our long dry spell so busy that I fear it will leave us longing for peace and quiet… and grateful for the Blessings of family and friends.

Mom is still sleeping most of the day and all night. We are having to cajole and wheedle and demand that she eat most days, but then other days she eats every bite placed in front of her… over a period of an hour or so. She isn’t drinking much so our incontinence problem is more one of constipation these days. It really is a juggling act trying to keep fluids balanced and comfort in all things. Any advice or guidance in the comments would be much appreciated! 

She is either so exhausted or is weak from so much sleep and not moving around much, but it is getting harder and harder for her to walk very far or to think through how to do simple things like turn around and sit down on the walker so she can be pushed the last few steps. She often gets half turned and can’t move any further. She will start to sit down and I have to try and get the walker, which is usually locked for safety when she’s trying to sit in it, to suddenly shift from one position to another to intercept her bottom as she sits down where she happens to have stopped turning. So far we have averted disaster, but I live in fear of her missing the seat and landing in a pile on the floor or falling across the walker and hurting herself.  We are always adapting.

She is also having a harder time remembering how to get onto the bed. More often now I have to adjust her as best I can and not worry if she’s a bit too far up or too far down on the bed. As long as neither feet nor head are hanging off the bed we are calling it a win these days!  Her blood sugar has been pretty well balanced lately, with only a day here or there that is out of acceptable range. 

All in all, she has truly enjoyed all the company she has been having and all our neighbors have brought over tempting goodies for our Christmas snaking pleasure. I try to give her something sweet each night, A little celebration of the season and something to pump that overnight blood sugar.

Merry Christmas to you all and I hope that all your Long Dry Spells are filled with the Blessings of family and friends!

Snow and other Delights

I’m sorry there has been such a lag in writing. We had house guests for a long weekend, which ALWAYS makes our world better and brighter, but it also left me focused on family and not on writing. I’m sorry.

I will note that Mom loved having the family drop in. While she may not recall now that they were here, she enjoyed seeing them when she was awake. They graciously planned the running and playing around her wakeful times so that they could spend it with her, but there really wasn’t a lot of it, for the most part. She then spent much of today sleeping in recovery. That’s a normal pattern for us.

I have found over the past few years that certain movies will wake her up and engage her mind. So, when I thought she was going to sleep all day, I put in an old favorite film of the season, It’s a Wonderful Life, and she woke up and stayed engaged and awake for the whole film. She had seen White Christmas with the family over the weekend and thoroughly enjoyed it, too. She loves those older films that she remembers somewhat and is more able to follow and engage with them than with some of the newer films.

She is having more of an issue with incontinence now, both with her bowels and her bladder. She was traumatized recently when she realized that she had had one such experience, but forgot it once we had clean Depends on her. I have said more than once, this disease is curse and a blessing. She doesn’t remember the humiliations inflicted upon her by the disease or any of the other traumas of life, like losing my father a few years back. She just lives in the moment and we work hard to make the moments as pleasant as possible.

She also gets to relive the delightful things over and over. We had a minimal snowfall over night and all through the day she would suddenly call my name, point out the window and say look!!! She realized, with great delight, that there was snow out her window about 25 times today! And I was on top of it enough to be excited at the realization each time it occurred!  

The days are getting shorter

Mom is sleeping much longer these days, but we are waking her up by noonish and getting her into her chair to feed her. With me, she eats more quickly, because I keep reminding her to wake up and eat. With the caregiver, who just lets her sit and doze, it can take her 2 hours, or more, to eat. I’m not sure that it’s a good idea to let her just sleep with the food in her lap, but, at almost 83, I’m not sure that I’m right about pushing her either. So we just go along and try to keep her happy and fed and warm. 

One of her grandson’s is coming tomorrow, for a long weekend with her, and I am hopeful that she will wake up and participate with everyone while they are here. Kids do seem to waken her heart and mind, and her grandkids are especially precious to her.

We have stopped giving her all the gel pills that she had been taking. They were mostly things like fish oil and coconut oil, to help stave off the advance of the disease. When she almost choked on one the other day we decided that there’s much less likelihood of staving off anything at this point and a much greater likelihood of her choking seriously on them. So we are down to giving her just the medicines proscribed by the doctor and the few chewable tablet vitamins that she’s been taking. 

Her blood sugar is staying well in check. We give her a cookie or a cupcake for dessert most nights to keep her sugars up during the long sleep. She is eating little enough now that she would drop well below the danger line if we didn’t give her that little sweet, or some applesauce with corn starch in it, to finish off the day. At almost 83, I figure she’s entitled to end her day on something sweet, and that’s that!  

But we do brush our teeth every night! My mom wouldn’t let me get away without brushing and I’m not going to let her do so either! What goes around, ends up brushing back around later, I guess!

She’s Still In there

I have to share a funny story from last night.

When our dog and I came to bed for the night, the dog settled into her bed on the floor and I climbed into mine with Mom. Feeling a bit sentimental, though, I got back out of the bed and hugged the dog one more time, then kissed her head. When I climbed back into bed Mom was watching me and so I explained to her that I was just hugging the dog. I asked her if she wanted a big hug too. She said yes, so I hugged her really tight. She squeaked an “oooh”, so I let her go and kissed her head, too. Then I told her I loved her. She said, “I… I…  I… ". So I finished for her, “You love me, too?” She said “Yes.”  Then the dog gave out a low “errr woof” at which mom started laughing and laughing.  I asked her what was so funny and she said, “The Dog does, too!”

I had thought the dog had heard a sound, but I think mom was right. With her loving heart and cheerful wit, Mom had more correctly understood that the dog was hearing the words “I love you” and adding her love to the consensus. 

Just when I worry about how much of my mom is gone, she shows me how much of her is still here! I sure do love her!

And One More Thing...

I just want to take a minute to thank all of you for the love and support that you provide to Mom and to me every day through your phone calls, your prayers and all the other ways that you connect. Your love is what carries us forward and your strength is what holds us upright through the storms! We Love You!

Few and Quick

Just a few quick notes tonight. Mom is still sleeping quite a bit and she is a bit grumpy with the caregivers when it’s time to wake up. With me, however, she is always sweet smiles and happiness, so I’m the alarm clock and sometimes the meal enforcer. It’s working for us! I have noticed that if we can get her to taste the food, she is usually willing to try and eat. Getting her to wake up enough to take that first bite is the real trick though. Often times we put the tastiest part of her meal in her mouth to wake her taste buds up. The toast with jam, at breakfast, is usually a winner, and at dinner it’s the fried chicken, or the fruit cup or… whatever she liked the most, the last time she had that meal.

On a bit of a funny note, she is moving away from using her utensils for eating now. She will eat things like her spinach with her fork, but when it comes to anything solid, she uses her fingers. Sometimes she will actually hold the fork in her right hand and use her left hand to eat her meal. Needless to say, we are keeping her hands well cleaned and her nails trimmed close so that we don’t risk her getting sick.

On the issue of germs, I think the local grocery stores consider me a bit of a germ freak. I’m the one who wipes the cart handle down, then the seat where my purse will sit, then the perimeter of the cart all the way around. Anywhere that my hands might touch in the course of a shopping trip, I wipe down. If the store doesn’t have wipes out, then I use the ones I keep in my purse. Why? Because we have one rule in this house above all others… bring no sickness into the house and around mom. With this disease, if she gets physically sick, her mind slips down, too. When her body is fully recovered, her mind has not come back as well. So, yes, we go over the top to keep germs away from Mom and if anyone of us does get sick, we Clorox wipe everything we touch in the off chance she might touch it after us. It makes the house smell funny, but we have managed to keep her from getting even a head cold for the past several years and I count that a win!

Mom is starting to be more prone to pain. When her foot was joggled by someone passing by her chair today, she cried out in pain. I don’t know if she was actually hurt or if she was startled and cannot register the difference in the sensations of pain and surprise. She cried out when I was holding her under her arm to steady her the other morning. Again, I hold her that way each time, but in that instance she seemed to feel intense pain, so I try to be extra gentle while still giving her the support that her increasingly wobbly legs need to keep her upright. 

Mom’s face, especially around her eyes, is getting puffy. I don’t know if it’s from too little movement, too little to drink or infrequent enough urination. I’ll try to get more information when/if I talk to the hospice team next week. If I don’t connect with them, I will ask her doctor. I just want to be sure that I’m not missing something that I could be doing to make things easier for her.

Did I say “a few” or “quick”? Sorry, I wax verbose on occasion. OKAY!! All the time!

Advice on Slowing Onset of the Disease

My sister recently reconnected with an old friend only to find out that she is working in the same Alzheimer’s Department at the VA Hospital in Seattle that is running mom’s Study program. In the course of their conversation, the old friend advised my sister that one n 5 people in our country end up with Alzheimer’s. Since there are 5 of us kids, my sister asked her if there is anything that we siblings can do to stave off the disease. She gave my sister some great information, which we asked her to put into writing for us to share with you. Her response is attached below.  I know what I’ll be working on now, because I’ve seen what happens with this disease and I’m going to hold it off as long as I can!

Additionally, based on the insights and advice she gave us regarding the final stages of the disease, I will be contacting Hospice Care next week to see if they can evaluate mom’s situation. As you know from reading this blog for just the short window in which I’ve been writing it, Mom’s situation has been changing dramatically and all the facets which are identified as part of the final stage are notably present and escalating in mom’s case. I know that’s now what we want to hear, but it is what I’ve been seeing. It’s also what the caregivers who help us have been seeing, based on my questions to them about her situation, as referenced below in the letter.

Here is the letter:

“I don’t have any literature to send with the prevention issues I talked about. I do want to clarify though, these are only ways that we can REDUCE risk factors for, and hopefully delay onset and/or slow progression of Alzheimer’s disease. The hope/thought is that if we can keep the “disease pathways” healthier, we can slow the progression or onset of disease. We cannot change our genetic risk factors, but we CAN do something about managing vascular risk factors i.e.

         Avoid developing Type II diabetes:  through lifestyle management like daily exercise and a low fat/low sugar diet, avoiding high glycemic index foods – things that the body breaks down quickly into simple sugars, like a popsicle vs low glycemic index foods, like an apple, that take the body longer to break down therefore avoiding big peaks of both blood sugar from eating the food and the insulin that is produced in response to those big spikes of blood sugar. Our data shows that just 30 minutes of aerobic exercise will reverse, at the cellular level, insulin resistance ( pre-diabetes) for 24 hrs!..exercise is very, very powerful medicine!

         Manage high blood pressure:  again, through lifestyle management of diet and exercise. Watch foods with hidden sodium (canned soups, sauces etc). If you have been prescribed blood pressure meds, take them.

         Manage high cholesterol:  again, through lifestyle management of diet and exercise. Have yearly fasting cholesterol labs taken. If you’ve been prescribed a cholesterol lowering medication, take it. I use Red Yeast rice tabs from Costco. My cholesterol is borderline high, but has stayed steady for the 5 years I’ve been taking Red Yeast rice. I also have very high HDL’s, which are especially protective for women.          

         Manage and REDUCE stress levels:  Chronic, high levels of stress are really bad for brain health. When your body is in a constant state of stress, you are releasing the “fight or flight” hormone, cortisol. We know that constant high levels of cortisol in the body cause an inflammatory response (because you are NOT supposed to have any hormones as a constant in your body, they work on peaks/valleys) that not only affects your body but your brain. We know that these inflammatory responses in the body (including your body’s response to high blood pressure, high cholesterol, type II diabetes) are damaging to both body AND brain.

To answer your question about mom’s increasing sleep time, could be winter time affects but also could be her body slowing down as her disease progresses. Your caregiver is probably picking up on some more clues with your mom’s behavior than just the increased sleeping and decreased alertness. The fact that she is spending most of her time sleeping may very well mean she is moving toward the end of her life. However, with this damned disease, sometimes it’s just hard to tell. When she starts to have significant decrease in wanting to eat or drink, along with the increased sleeping, you are probably nearing the end of her life.

It would not be unreasonable to get hospices services in now, to offer emotional/ physical/ spiritual support for your mom AND the family/caregivers. If her PCP believes she meets hospice criteria i.e. increased sleeping, decreased verbal interaction, bladder/bowel incontinence, ( and some others that I can’t remember right now) I would highly recommend it. FYI, she may well rally with some hospice team care, then no longer meet hospice criteria and then get pulled off of hospice!...Alzheimer’s patients often “graduate” from hospice care, then when they start to decline again ( which they always do), then they can go back on hospice. Hospice benefits do NOT end after 6 months of care. Folks just get re-certified as meeting hospice criteria (via the PCP/hospice team agreeing that they meet criteria again) and go back on. It is an old wives tale that you only get 6 months of hospice care, simply not true. That being said, her PCP and Providence Hospice, may NOT agree that she meets hospice criteria at this time. Hospice is used far too late in far too many cases!  It’s a wonderful service and highly recommend it, especially for end stage Alzheimer’s patients.”

Simple Approaches

I always liked multiple choice tests in school. I knew the right answer was there, I just had to deduct which of the choices available to me was the right one. Easy, right?! Except not when you have Alzheimer’s. I have found that asking mom a question with more than one option causes her confusion and distress. “Would you like to watch the end of the movie or are you ready to go to bed?” will trigger either a single word answer of yes or no, or it causes a pained look and then she will lay her head back against the chair and close her eyes tightly. I then feel horribly guilty and try to rephrase the question into one choice. “Do you want to watch the end of the movie?” I usually get an answer that way that makes sense. It’s all a question of simplicity… Or should I say it’s all about a simplistic question.

I would also like to say that I continue to be worried about the time that Mom is spending sleeping. I’m finding that my spidey senses are tingling like mad, they are telling me that I’m losing her, but I have no reason to think that. So I asked the week day caregiver what she thought about the way things were going. She hesitated and then said that she is not allowing herself to start grieving or believing that the end is approaching because there is nothing on which to pin that feeling, it’s just… there.  Is it the holidays, the grey, rainy weather that mkes us feel that way or is it something else? I guess only time will answer that simple question for us.

As I've stated, I want this blog to be about the caregiver process, as well as tracking Mom’s day to day progress for family and friends, so I’m going to segway here to a caregiver note on what I call quiet stress.

We each have tell-tale signals that our bodies give us to warn us that we are under stress. Mine happen to be my psoriasis and the small blisters that I get in my mouth. I had been having flaring ups of both indicators lately, but I don’t feel stressed about anything, per se. I have the usual stresses, 15 places I need to be this week and caregivers taking time off through the holiday season, no Christmas gifts lined up yet, a house that needs to be decorated, changes in my health care provider, braces that were cutting my mouth, not enough sleep at night and a million other things that we all deal with every day. But nothing that is really causing me “stress” as I would define it. So I ignored the signs, blamed them on other things and they got worse. Once I admitted that they were stress related, I knew what to do to treat them and I have done that. However, I have to find a way to contain the “stress” or the symptoms will return. So I do what works for me... I make lists.

I make lists of the things I need to do, the people I need to contact, the appointments I need to schedule for my Mom, the meetings I have to attend, the maintenance items I have to handle…. All of it goes on to a list. Then I break it out into small, manageable chunks that I can accomplish each day. As things are marked off the list, I feel like I’ve made a step forward. If something new is added to the list, that’s fine, it just gets put in its place and I deal with it in turn. I try not to set too many things into a single day because, if I don’t get them done, I add a layer of stress for not pushing hard enough. As with mom and the questions, I try to keep it simple. And there is nothing as satisfying as coming to the end of my list for the day and seeing most, if not all, of my projects scratched off. If I don’t make the list, I can be busy all day, but I still sit down at the end and feel like I got nothing accomplished, because I didn’t finish everything, or, even worse, I remember something that I had forgotten to do while I was out. Yeah, that one really aggravates me! And that aggravates my stress level. So this week I am busy crossing off my lists… and crossing off the quiet stresses that I was not even aware were building.

Pill Play

We had a really great day yesterday! We were wide awake, we ate, interfaced, went to the restroom and did it all at a normal level of function!! YEA!! We celebrate good days! Today we are back to the, now, more familiar pattern of heavy sleep and incontinence. But the day is early. We’ll see where it takes us as we move through it.

We have had a shift in another routine, though. The little pot of pills that mom would take in the morning and evening have now got to be put in her mouth directly so that she can chew them and swallow them without losing them. (FYI: swallowing is one of those things that is impacted by Alzehimer’s. It becomes harder and harder to swallow until even liquids can be difficult. I think thick liquids like applesauce are actually easier for her to swallow than liquids or solids, like her pills. Hence, the chewing of her pills.)

Mom has begun playing some fun games with her pills. She will take them out of the cup and line them up on her dinner tray. Or she will use her fork or spoon to scoop them out of the pill tub. Either way many of them end up on the floor and I have to scramble around under the chair to find them. This is apparently quite funny to watch… To Watch. Humph!  ;)

Another favorite play of late is to take whatever she is eating and pile it into the pill cup. I’m really not sure where that comes from? Maybe it’s because they are applesauce cups, originally, and she thinks that she should be eating out of them? But never the less, the pills begin to break down when the moist, warm food hits them, so I begin a rapid feeding process to get the food and pills into her before they breakdown and melt into the cup. Again, the problem with swallowing comes into consideration and so we try to balance slow chew and swallow with the rapidly dissolving pills. Not as funny to watch apparently, but that’s when the feeding games begin and mom starts playfully pretending she won’t open her mouth for food until I cajole her into it or laugh at her joke then tell her I’ll send her to bed without dessert. Hey… It worked on me when I was the kid!

So now, I just pop the pills in her mouth for her and we avoid all the fun for her and all the games for me! I know… I’m just no fun anymore!

Asleep and Awake

Mom is sleeping a great deal of the time now, she is really only awake for about 6 hours most days, with a bit of napping throughout that time. I suspect that we are moving further into the phase where sleep becomes an almost constant thing. But we’re not there yet, so we laugh and watch Christmas movies, look at all the twinkling lights on the trees and enjoy the time we have with daylight and wakefulness.

In conjunction with her sleepiness, mom also seems to be getting weaker. She can barely push herself up to the edge of the chair and offers little assistance to me when I am trying to get her up to move. I’m not sure if the weakness comes from her lack of movement or if it’s just another symptom of the phase we are in.

The other day, for the first time, mom actually hesitated when stepping from the white carpet of her room onto the darker marble of the entry way. I understand that it is not uncommon for Alzheimer’s patients to be confused by dark colored flooring; they think that it’s a hole in the floor, but mom has not really shown much concern over such things until the other day. Even then it was just a momentary hesitation, so it may not mean anything more than that moving from carpet to tile made her nervous. It will be interesting to see if it happens again.

On a decidedly happy note, friends came by tonight to bring their 4 month old to visit mom. I know you think that sounds odd, but the maternal instinct in mom is so strong that she comes alive and laughs and plays with the little ones when they are here. It is such a delight to see her play with the babies and I am always so grateful to friends when they bring their children by. The mother instinct doesn’t seem to fade with the other memories and those big, toothless grins and drooling giggles just light up her face and stir up her sleepy mind. What a blessing it was to put her to bed with a big smile still on her face.

Entertainment

We have found that staying awake is easier when we are watching a great movie…. or a really fun movie. We are drawn to the animated children’s movies, as a rule. Films like Tangled, Toy Story or the Ice Age films are almost always a guaranteed hit. Other non-animated kids movies, such as the newer version of Peter Pan, Babe or Nim’s Island are also great choices. They have plots that are easy to follow and, when she can’t follow the plots any more, Mom enjoys the large gesture laughs and the goofy situations. She enjoys the whimsy of animals talking, or children flying and delightedly fighting pirates. She can watch them over and over again and enjoy them just like it was the first time she’s seen them. She will also marvel each “first time” that I know all the words to the little songs in the movies…  Yes, a good old children’s movie works wonders for a sleepy mind.

However, nothing works like the great old movies that she has known and loved for years. Doris Day, Errol Flynn or one of those great old musicals will keep her smiling and singing along in delight. The old movies are the ones she loved when she was young, that she watched with my dad and that she still recognizes when she doesn’t remember the person with whom she was just talking. Oh, did I mention that the best movies, the movies she remembers so well that she will stay up late to watch them, would be anything with John Wayne in it?!  Well I should have. She wanted to go to bed at 4:00 and here we are, 3 hours later and one and a half John Wayne movies in and she’s wide awake and unwilling to go to bed until John Wayne saves the day! She may not remember which movie it is, but she does remember that John Wayne will always save the day!

Worrisome Declines

I’m becoming a little bit worried that mom is spending so much time sleeping, and sleeping heavily. For the past two days she has slept so heavily that she has failed to notice that she needed to go to the bathroom. Her Depends kept her dry and safe, but we may be slipping into a new pattern. OR… we may just be dealing with the exhaustion that comes from over stimulation. With all the family visiting and laughter that goes along with the Thanksgiving holiday, she may just be exhausted. It is not unusual for her to sleep for a day or two after such exciting events.  I will say that she has, on more than one occasion been so fast asleep that she had to practically run to the bathroom, but she has not often slept so hard that she didn’t even know she needed to go.

Also, she is having a harder time doing some of the little things that she normally used to do, such as getting up from her chair, pulling up her pants after she goes to the restroom and even remembering where her bathroom is from her bed. This seems to be more a growing trend than a “now and again” thing, so it is worrisome. She is still very capable of brushing her teeth, though, so it may be more an issue of balance problems when standing that throws her off focus with some of these things. Sometimes it’s hard to know if we are in a changing pattern or if we are just seeing a slump while she gathers her strength.

It's the Small Things

With Alzheimer’s the brain stops tracking the way it used to on such things as words, memories, and conversational control. It also impacts motor skills, too. Doing simple things like dressing, feeding yourself and basic hygiene becomes less and less manageable as the disease progresses. I may be wrong in my approach, but I always try to have my mom do as much as she can by herself; from pushing herself up out of her big chair to walking instead of being pushed in her wheel chair and even to performing her own ablutions. I can judge how tired she is, by how many of the small things she can do for herself.

As she has moved through this process we went from a woman able to select her own clothes, dress and put on make-up, to a woman who sits passively while she is washed, dressed in jammies, in which she almost exclusively lives now, and her hair is combed for her. She can still brush her teeth quite thoroughly, but she really has no concept any longer of personal hygiene.

She has gotten weaker, as time has passed. On good days she can walk, with the aid of her rolling walker, back and forth from her bed room to her bathroom or from her bedroom to the family room/ kitchen.  On most days, she can only walk part of the way before being exhausted, but walk she does so that she can keep up some of her strength.

I have noticed at night that she is just fine when she’s sitting and watching the TV, but when it’s time to get up she goes wobbly and seems shaken. Sometimes she even sags over on one side or the other. I’ve done the stroke tests, smile, raise your arms, repeat after me, and to all of them she responds perfectly. Worried that she might be having TIA’s, I asked the Dr with the Alzheimer’s study program about the incidents when she called for the annual review. She indicated that it is most likely a result of the disease. When tired, Alzheimer’s patients can have little glitches in their circuitry that looks like a mini stroke, but is just a weary brain that can’t find the direct pathway it needs to accomplish its task.

We keep trying to stay ahead of the big things related to this disease, but sometimes it’s the small things that seem so big.  Unless we handle them together, then nothing is too big for us.

Being Still

There are those days when you have a million things planned and the schedule is going to be tight… and then the phone rings. Your caregiver can’t make it in today and suddenly you go from a screaming run to…. Stillness and slow motion.

I have to admit that coming out of the fast paced business world and having to learn how to be still is not as easy as it sounds. Your mind and your body are geared to a state of constant motion, always thinking through the current problem, prepping for the next appointment, coordinating with everyone involved in the process, pop, pop, pop!

And then you have to learn how to retrain your brain to notice the small changes in diet, or sleep patterns or behavioral shifts that could mean something… or nothing at all. You are the only one who can get her to eat, or bathe, or just get out of bed. You are the one she remembers and you are the one she looks for when she’s worried or confused or frustrated.

 You get out when you can, but chances are good that you’ll get at least one call to talk to her about doing something she’s pushing back against doing. The time away is limited and the time of sitting and watching is sometimes unending, so when you plan on a busy day and you get “That Call”… it’s always frustrating… at the very least.

Learning to be still means you find other ways to entertain your mind. It means you read, you meander through the internet, you watch TV while you keep a steady eye on the monitor that’s keeping an eye on her. When she’s awake and fed and sitting up in the room with you, then you can do things like clean the kitchen, vacuum the room or clean a bathroom. While she’s engaged in what she’s eating or watching on TV, you have a bit of move around time, but when she’s sleeping and could try to get out of bed unnoticed you don’t dare be too distracted or you will miss her move and she could fall.

So you learn to be still. When you get a chance to run, you run, but when that call comes in that tells you that your planned run is on hold… you smile, you sit down, and you go back to being still, because that’s what you need to be doing.  

You can always fill the still times by blogging about being still… it works for me!

Irrational Fears

Over the past few weeks Mom has been experiencing nightmares, of a sort. She must be dreaming that she is alone because she will wake up calling my name in a panicked manner. As soon as she hears my voice she calms down and goes back to sleep, perfectly at ease and no longer worried. I spoke about this behavior with the interviewer from the Alzheimer’s study when they called last week. She said that it isn’t dementia setting in since it is occurring only in Mom’s dreams. She thinks it is a perfectly normal manifestation of the disease, however. I suspect that, not really knowing where she is all the time, even in her own home, makes her more fearful of being left alone and lost. She is never alone, but, when she’s sleeping, she doesn’t always know that. It’s an irrational, but totally understandable, fear.

Frankly, I can identify with irrational fears. I have been having panic attacks worrying about what will happen to me when I am no longer needed here to care for mom. Where will I go, what will I do make a living at my age? Will anyone be able to take care of me when I need the same help I’m able to give now?  These are apparently normal questions and points of worry for caregivers. I was stunned to find out that I am not just a paranoid worry wart… well, I am, but I’m not the only one! I am blessed, however, to have family who support me in the care of my mother and in assuring that my worries, my irrational fears, are soothed just as I soothe my mother’s.

There is no way that I could do what I do for my mother and maintain a calm and patient approach without the backup, support and constant care of my siblings, aunts and cousins. They all step in when I am worried or tired and take the needed steps to keep me in one piece so that I can continue to do the same for Mom. I honestly don’t know how people, who don’t have the vast support structure with which I have been blessed, can do what needs to be done without falling apart now and then.

Irrational fears, yeah, we got ’em! But I’m here to soothe my mother’s fears and my family allows me the freedom to plan, sometimes on a microscopic level, the way the next phase of my life will go and to set those plans in motion in order to allay mine. Mom may start awake at night, crying out, in response to her fears, while I lay awake at night trying to plan everything out step by step, over and over, in response to mine, but that’s okay. At least I’m awake and ready to respond when she startles awake and calls my name. So it’s all good!!

The Good, The Bad and The Wonderful Man

The Good:
Yesterday we got a call from Mom’s distant past. When I was probably 3 to 5 years old we lived in Ithaca, NY while my father got his Master’s Degree from Cornell. I don’t remember a lot from that time, obviously, but I heard stories for all of my life about the wonderful friends my parents made, the fun they shared and what a precious gift my parents had always considered those people and that time in their lives to be.

Yesterday afternoon we got a call from one of those special people. They had not spoken with my parents in years and their brilliant Geek Son helped them track my parents down. They didn’t know that my dad had passed until we talked. They didn’t know that mom has Alzheimer’s until we talked. They didn’t know that their call would be so magical until we talked!!  After we had chatted a few minutes I asked them if they would be willing to try and talk to mom. They both responded delightedly in the positive and I handed over the phone to mom. I told her who they were as I handed her the phone and she started smiling… she remembered them!!

I listened to the conversation, but it was watching it that really touched my heart. I could hear their voices on the phone and then mom would struggle to find the words to say what she wanted to say. They listened patiently and, when she paused, they laughed and leapt in with another tale or comment. Mom’s smile got bigger and more beautiful as the conversation, one sided as it was, progressed. When she handed the phone back to me about 5 minutes later she was outright giggly! Later, when we went to bed I reminded her that they had called and she talked about the call for 30 minutes, asking me over and over again where she knew them from and what was their name… each time I would tell her, she would pause, smile and say they were always such wonderful  people, just such wonderful people.  After 30 minutes I told her that I would put her in time out if she didn’t stop giggling and talking so that we could go to sleep.  She giggled again, and drifted off to sleep with a smile on her face.

The Bad:

This morning, between seeing her throw back her covers on the monitor and getting down to her room to help her, mom had tried putting on her house shoes and slipped off the edge of the bed and onto the floor. The bed is low and the carpet is soft, so she was comfortably stretched out on the floor when I reached her. I knew I could not get her up by myself and the caregiver was not due to arrive for a while. I tried calling my very dear neighbor next door who has helped me before in an emergency, but the answering machine was all I got. So I tried to get mom up from her back and that didn’t work. I tried rolling her onto her stomach to get her to her hands and knees, but she couldn’t process the steps to push up with her hands and get herself onto her knees so she was trapped on her face. Each time I tried to move her to a different position she would cry out in panic because she didn’t know what to do for herself and I was not strong enough to get her up on my own. On the borderline of tears, fearing that 911 was my only remaining option, I tried my nice neighbor one more time and when he answered the phone that time, I really did almost cry. He came right over and, between us, we were able to get her up from a sitting position and onto her feet, then into her walker chair. Once there, it was easy to tackle the rest of the day, but getting there was not the way I want to start too many mornings.

My neighbor stayed until I had mom settled. She took his hand and chitty chatted with him, laughing and joking while I was trying to work joints to be sure that she had not hurt herself in sliding off the bed or rolling on the floor. It’s very difficult to assess the wellbeing of a woman who is busy flirting with a handsome man at the same time… From which I was able to determine that she was no worse for the wear after her fall.

Oh… the wonderful man… of course he’s my neighbor. I cannot say enough about the blessing that all my neighbors have been in the course of this walk. I really feel like it has become a neighborhood project to love my mom and help us through this time. I’m glad I’m in a neighborhood overburdened with loving people!  

Christmas Music and Laughter

Today was one of those days when mom just didn’t want to get up. She had been up bright and early for two days in a row and this morning she wanted to sleep! The caregiver tried opening window blinds to make the room light. She tried turning on lights and music. She even tried tilting the bed upwards to see if she could wake her by putting her into a semi sitting position. All her efforts were to no avail and Mom was getting irritated that she was being asked to get out of bed at the outrageously early hour of 1:00. Teenagers and princesses have nothing on mom when these mornings happen!

I had gone out for a while with friends and, when we got the call in the middle of lunch, they graciously asked for to go boxes and we dashed home to try and get her up. It was important because her blood sugar had already been low early in the morning. We’d given her applesauce with corn starch in it to hold her over until she was ready to wake up, but by 1:00 it had worn off and her sugar was starting to drop again. So it was up to me and my bag of dirty tricks…

I raised the bed all the way up, put a Christmas movie on TV, (yes, the Hallmark channel is already running them on the weekends) and then had my friends come in with their joyful voices and friendly laughter to chat with mom. When she heard their voices, the hostess awoke, and she dragged the sleeping princess into full wakefulness with her. They stood beside her bed and chatted with her about whatever she wanted to ask them about while the caregiver slipped out and warmed her breakfast back up. Before she knew what was happening, she was sitting in her chair eating oatmeal and singing along with the Christmas carol that was playing in the movie. It just seems wrong to trick your mom into doing things she doesn’t want to do, but I guess doing it with laughter and Christmas music softens the blow a bit!  

Caregivers

When I first agreed to come and stay to help mom and dad, my father had insisted that we hire caregivers to cover the daytime hours so that I could get away now and then. I had told him that I didn’t need that help and suggested that he save the money, but he ignored my suggestion. These days, I really appreciate the wisdom and foresight of my father.

Caregivers are more than just a babysitter for seniors. We have been blessed to have worked with some of the best and most loving women I have ever known. They have their own lives and some days scheduling can get crazy, but they are there when I need them and they always bring their A game.

We have one who works Monday through Friday and one who works weekends. They cook mom’s breakfast and serve her lunch, or early supper as lunchtime sometimes works out to be late in the day. They do light house cleaning, they make sure that mom’s clothes and undergarments are always fresh during the day. They give her the medicines she requires and track her blood sugar. One of them helps me give her showers and both keep her clean in between those showers. They do all sorts of things for mom, but the main thing that they do for mom is to sit with her during the day. They keep her entertained when she’s awake and safe and warm when she’s asleep. And for me, they give me time to not be “in charge”. Sometimes I get out of the house and run errands, but other times I just hide in my office and work on my writing. I get to take walks with our dog or I slip away with my camera and connect with the peaceful joy that taking my silly little pictures brings me.

Each of the care givers who have worked with us has had their own array of training and experiences and they have proven to be a valuable resource in handling the new twists and turns of Alzheimer’s. They warn me when they see new behaviors developing. They alert me as they notice patterns that could cause mom physical harm. They are full of ideas and wisdom and they are more than willing to offer both as the need arises.

All of that said, I also have to add that they have proven to be generous and loving in their daily support of me, even when I’m tired and cranky. My life would be so very difficult and frustrating without them and I am so very grateful to them for all they do for my mother and for me.

Light in the Darkness

Most days in the winter are misty and grey. They never quite get light enough to rouse mom from her winter lethargy. Every once in a while, though, we get those sparkling days when the sunlight bouncing off the water is almost brighter than its brilliant aerial source. Yesterday and today have been those kinds of days and mom has been awake and energized for much of both days.

Yesterday when we made our morning run to the restroom, she looked around and then turned to me with a puzzled look on her face. “Where’s the toilet paper?” Now, we have been cleaning her up each time she goes to the bathroom for months, but that morning the light was shining in the darkness of her mind and she was my old mother. No WAY was I going to clean her up and no WAY was she going to use a wet wipe to clean herself. We eventually arrived at a compromise, but it was wonderful to see her brain working the way it used to work.

This morning mom also woke up early and was ready to get out of bed and get her day started! My caregiver had not yet arrived so I got her settled in her big chair with a banana and a cup of tea, then set off to the kitchen to start breakfast.  At that moment, the phone rang and a soldier, a wounded warrior, that we had “adopted” for Christmas the year before told me that he was at the door. He had just dropped in to say hello and introduce a buddy of his from the wounded warrior battalion. I think it’s safe to say that David has adopted us also and we are the closest thing to family that he has here, so it isn’t that odd for him to bring a buddy by to meet us… although 10:00 in the morning is a bit earlier than usual.

They had just left the base so David was in uniform. He asked if he could come in and say hi to my mom. She was delighted to see him and acted like she recognized him because no good hostess would admit to not knowing a guest. He came over, gave her a hug and introduced his friend who also reached over to shake her hand. I mentioned to his buddy that mom has Alzheimer’s and might repeat a question or two. He assured me that his Grandmother had suffered from Alzheimer’s, too, and that he was well acquainted with the ups and downs of the disease. I am often amazed at the number of people whose lives have been impacted by this disease in one way or another. But I digress…

David was holding Mom’s hand, as is her habit with visitors. She had given him a kiss or two on his hand in welcome and then she reached up and grabbed the hem of his uniform blouse. She gave it a little tug and said, “You’re in the…. Bill!” She couldn’t remember the word for which she was looking, Army, but she remembered that Dad had served in that uniform. So David patted her hand one more time and said “Yes! I am in the Bill!” Her face lit up and the light sparkled again in her eyes. You gotta love the light in the darkness!

Tremors

I have noticed over the last 6 months or more that mom has developed a tremor in her left leg and her right hand. Neither is constant, but both are starting to become more frequent. I’m not sure if they mean anything, but it does make holding her fork to eat more difficult and I worry, when her leg starts shaking as she tries to stand, if she will be able to hold her own weight.

Since I have to talk with her doctor about her low morning blood sugar numbers on Monday, I’ll ask him about the tremors, as well.  The only problem is that, when I ask the Dr about something, he wants to see her. A trip out of the house is always a nightmare, so we investigate a question by creating a monster. Just Call me Frankenstein!

Hot Dogs, Cold Cats

There are those quirky little behaviors that come with progressing Alzheimer’s, some physical activities, some verbal. Both are reflections of the brain trying to hold its ground against the encroaching darkness. Mom’s verbal quirks were, at first, quite humorous and, later, quite annoying. Now… now they are greatly missed.

For a couple of years Mom would express agreement, concurrence, or happiness by saying, “Hot Dogs, Cold Cats, Fried Monkeys and Stewed Rats!” It was an old saying she had taught us as kids. I have no idea where she learned it, but I suspect it was leftover from her youth, as well. Friends would come over and she would say it and they would giggle and encourage her to say it again. After about three months of that, okay maybe about 3 weeks of it, I got tired of the saying and was more than ready to take the hot dogs and the cold cats and stuff them where the stewed rats don’t shine…  but still people would come to visit and mom would express her delight to see them by recounting her full ritual of yummy animals.

Some people would try to confuse her by misleading her in phraseology, hot dogs, cold cats, yellow monkeys and fluffy rats, or some variant thereof. They didn’t really understand that being able to hold accurately onto that phrase was part of the anchor her mind had formed to keep itself from drifting farther afield. It was their way of playing the game with her and she always laughed with them, not understanding that she had gone adrift, but knowing, in her loving, hostess heart, that they were sharing a laugh together.

That annoying phrase, the one that used to make me pull my hair out, that phrase has now drifted off into the abyss of Alzheimer’s. Now, when delighted or in concurrence with a plan, she’ll still say, “Hot Dog”, but the rest of the menagerie is out sight, out of mind. And I miss them, because I know that they took a bit more of my mother’s memory with them. So now, I’m the one who recites Hot Dogs, Cold Cats, Fried Monkeys annnnnnd…..  And I wait patiently to see if the Stewed Rats surface in her smile. Sometimes they do and sometimes they don’t, but either way we laugh at the silliness of the old saying and step forward into the next change.

Patterns and Routines

I have found that, in doing the everyday things successfully, it’s best if we establish and maintain a routine… a pattern of habits that we follow each time. Doing simple things like placing the walker/ chair in the same place each time we go to the bathroom, laying out the wipes and wiping our hands the same way, even using the same words when directing movements. While she may forget, with her mind, the patterns, the repeated ritual of doing the same things the same way lead to an instinctive response in those times when mom is most exhausted and unable to process instructions.

I’ve always talked a lot… a lot. I’m finding that habit coming in handy these days. Mom seems to relax and work with me better when I’m telling her everything I’m doing as I do it, or even before I do it if it involves sudden movements or loud noises. For example, “I’m going to pop the lock of the handles of the walker and then push you sideways so hold on.” Or "I’m going to roll you backwards and then pull you up to the sink, but I promise I’ll stop before your knees touch. So don’t worry.” Telling her what is happening makes her feel more in control and more at ease as things take place. When your mind can’t process a thought at normal speeds, then even things that move slowly can feel like they are spinning out of control.  

On the other hand, sometimes it’s best not to say too much. I usually prepare her tooth brush and water while she’s in the toilet. Then, when she comes out, we roll over to the sink and get our teeth brushed. I roll her into place, not banging her knees, as promised. Then pull out a Kleenex and fold it as I walk around her chair to reach her tooth brush.  The electric toothbrush always makes her nose run, so it’s best to have the tissue ready for her when she’s finished with the brushing process. I then hand her the toothbrush and tell her to put it in her mouth. When she’s done I help her stand to rinse and swish. Then I get her resettled and hand her the tissue before moving her out of the bathroom. It works smoothly... usually.

One time, I handed her the toothbrush and said, “Put this in your mouth and turn it on.” She heard “turn it on” last and so, halfway to her mouth, that’s what she acted on. With a fully charged electric toothbrush, that green gel tooth paste didn’t stand a chance. We had green gel on the mirror, the counter tops, the walls and all over both mom’s face and mine as I jumped in to grab the brush and turn it off. We were truly slimed. Needless to say, all I ask her to do these days is put it in her mouth. We let those patterns of habit do the rest.  

Cheep Cheep, Little Birdie

In addition to her Alzheimer’s, mom is contending with Diabetes. As we move into the sleepy time of the year it is harder to get enough food into mom to keep her sugar balanced with the amount of insulin she has to take. We are steadily, and at the Dr’s direction, reducing her insulin to accommodate the decrease in food intake. One of the things that we do to help keep the sugars up overnight is to put corn starch in her applesauce, or other fruit cup. It doesn’t change the flavor too much and it takes longer to break down in her system, so her sugars are steadier in the mornings.

This morning her sugar was a bit low. It’s the third day in a row that her sugar has been in the 80’s and 90’s. They want her sugars to say between 100 and 125 these days, so I needed to bring it up. She is often sleepy in the mornings and not much inclined to have applesauce popped down her throat when she wants to sleep. Today was such a day. I put some cornstarch in peach mango sauce and we played feed the little birdie! I raised the head of her bed so that she won’t choke on anything and I said, “cheep  cheep little birdie, here comes Momma with your food.” At which she giggled and popped open her mouth. As with so many other things in her life, laughter is the key to mom’s willingness to engage or participate.

One thing to note, with Alzheimer’s it becomes harder and harder to swallow things. I have come to understand that’s why, in part, she chews all her pills. So keeping her head up to let gravity help move the food down is really critical, and her new, moving bed, is a great blessing in that regard. I no longer have to make her sit up on the edge of the bed in order to feed her something. She can relax and lay back and just let her bed do all the work!

Alzheimer's Attitudes

I have heard many people say that, with Alzheimer’s, the patient becomes angry and aggressive as the disease progresses. I have to say, from my experience with my mother, that is not always the case. My mother has always been a loving person. She has always encouraged me to approach things from a positive perspective instead of taking a negative approach. When she was working in the business world she was a professional, pragmatic business woman. But beneath that lived the tender heart of a loving woman. I recall the time, when one of her tenants was behind on their rent, that she went to the house to post a pay rent or vacate notice. At that time she spoke with the tenant and found out that their child was in the hospital with cancer and they simply didn't have the money to pay the rent. Not only did she waive the rent for that month, and couple more for good measure, but she went out and bought groceries for the rest of the family and took it back by their house.

Now, with Alzheimer's very clearly in an advanced stage and advancing relentlessly every day, she is not angry. She is not aggressive. She may occasionally be a bit stubborn if she isn’t ready to get up or if she doesn’t want to change out of her warm pajamas, but she isn’t angry. She is, in fact, quite joyful, and happy and even silly on occasion. She makes jokes, in so far as she is able to do so, and always tells those around her how lovely their eyes are or that she thinks they are beautiful or handsome. She is a consummate hostess, greeting any visitors with a smile and a kiss on the hand. Nowhere is there a trace of the anger or the aggressive behavior that is so often associated with the disease.

Perhaps it’s because she is in her own familiar world, or maybe it’s because she knew what was coming and made arrangements in advance so that she could move into this phase of life with a peaceful mind. It could be any number of such things, I guess, but what I believe it must really be is that with Alzheimer’s you are stripped of all the pretenses, the professional fronts, the sophisticated manners and what you are left with is who you really are, the essence of the individual’s nature. In my mother’s case that is a joyful and loving woman with a natural instinct for caring and a positive approach to life. In other words, even in the face of this disease, she is a blessing to those around her.

Pills by the Spoonful

Lately mom's sugar has been a bit low because she's in the sleepy season and isn't eating as much. Interestingly, if you put a teaspoon or two of corn starch in apple sauce (or our favorite, peach mango sauce, or even fruit slices) it helps to keep the blood sugar up for a longer period of time. I guess it's slow to break down in the system. So... since she's been too drowsy to really eat much these past few days, I've been giving her the applesauce and corn starch as part of her meal.

We clean and save the used applesauce containers, as they are individual sized servings, and use them for her pills. We put them in the little cup and set it on her dinner tray so that she will eat them with or following her meal and, hopefully, avoid upsetting her stomach.

The past few days Mom has eaten her applesauce, then picked up her pill cup, which looks just like her applesauce cup, and used her spoon to scoop out the pills. Fortunately, the spoon has been still covered with some apple sauce so the pills have actually stuck to the spoon pretty well.

Mom has never eaten her pills with a spoon before, so this is new behavior. In the mornings she has not had applesauce with her meal, so she picks the pills out of the cup with her fingers as she has always done. I find it interesting that her brain is connecting the cups together and so leading her to use a spoon in the second cup as she has just done with the first cup. The brain is a curious thing.

Jingle Bells in My Dreams

Mom had fallen a couple of times trying to go to the bathroom at night by herself, so I have moved into her room and sleep in her bed with her at night. She doesn't move around at night; she climbs into bed, settles into place and doesn't twitch from that spot until she gets up for some reason.

Because she sleeps long periods at a stretch and doesn’t move while sleeping, we were worried that she might develop bed sores. To avoid that we bought her a memory foam bed that can be raised at the head and foot so that we can keep her moving and no one spot will bear the weight the same way for too long. Great!!!!

Except that, she was already Ninja silent when getting out of bed at night. I called her my Stealth Mommer. The only way I knew she was getting up was when I felt the bed moving. With the memory foam mattress, the bed doesn’t move. So I pinned jingle bells to the fringe of her side of the bedspread. Now, when she starts to get up, the bells go off and I can get to her before she gets up and falls.

Last night, I was exhausted, I was wracked out fast asleep. I was dreaming of old time airplanes at an air show…. I have no idea why, so don’t ask. As I watched, one of the plane’s engines started making a funny noise, like jingle bells… In a proper Pavlovian response, I jumped up in my dream and started running. As I woke to realize that the jingle bells were not JUST in my dreams, I was already out of bed and half way around it. It actually took me a moment to re-orient myself to the dark bedroom from the open air show I had been in a few seconds before. But I was moving without being awake. 

I am a soldier’s daughter. I grew up on tales or heroes who, when the tumult arises, advance to the sound of danger! I find it somewhat disturbing that, when the tumult arises, I advance to the sound of jingle bells.

 

Yeah….

Seasonal Adjustments

As we move into the dark half of the year mom becomes more somnolent and immobile. The grey cold days seem to get into her bones and into her attitude. She likes to just snuggle down and snooze.  I’ve found that some days she will sleep almost all day. On those days it’s hard to get enough food and drink into her to be safe. On the upside, she usually is wide awake the next day and fully engaged with what’s going on around her.

Today was such a day and we enjoyed movies and three full meals and some delightful chitty chat. That makes it a good day.

The Beginning

Let’s start with a little back ground…

My Mother was born in Marshall, Texas in 1930. She was active and engaged in High School and went on to achieve a degree in Journalism from Texas Christian Women’s University. She married my father the day he graduated from West Point and they set out together to build a life and multiple careers in a variety of challenging fields and times. She was a brilliant business woman, an educator and a strong and loving wife and mother.

When her father was diagnosed with Alzheimer’s, she and all of her siblings realized that they too had a chance of developing the disease. When her memory starting giving her problems, my mother joined a study program for a new drug designed to treat Alzheimer’s. She went through many intricate, and sometimes painful, procedures in order to participate. I asked her once why she was willing to go through such things as a spinal tap just to help them study a drug that might or might not help her. She told me that if she went through all of that, then maybe it would mean that her kids or grandkids never had to face the burdens Alzheimer’s.

That’s my mom.

Every year, faithfully, since she finished the study program and the drug was released for public use, she has gone back to the VA Hospital in Seattle to do the follow on question and answer sessions, the comprehension tests and the memory analysis. This year, for the first time, I think she will simply not be able to make the run up to Seattle for the tests.

As I move through this blog I will be trying to make regular posts on day to day changes, the ups and downs. I’ll also try to fill you in on the background story. Who my mother was, who she is now and the steps, large and small, that have brought us to this point on the Alzheimer’s Path.