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.