Laughing Through the Tempests

We are stepping up our game and getting the hospital style bed for mom. Not because she has declined, per se, but because she is having such a hard time getting into and out of bed. Yes, we did get the bed that moves so that we could help with that, but eventually it became too high also as her ability to settle into it decreased. So we took its legs off and now it’s the perfect height to get into… but it’s impossible to get out of when it’s that low and her joints are feeling so achy. So we are pulling out the stops, and the chairs in her bedroom, and having a hospital bed installed. Then maybe we can put the legs back on the bed so that I don’t have to feel like I need someone to come and pull me out of the bed each time I need to get up. I was going to rig the dog up with a sled dog harness for that purpose, but she identified her disapproval with that plan and I have moved on.

We are going through days when mom has frequent toilet runs each night, like every two hours, followed by days when she only goes one time a night. I obviously get more sleep on the latter nights, but both tend to make me worry that something is wrong. Therefore, I am working on practicing the great advice I was given by both the Hospice nurse and our friend the Alzheimer program nurse… Don’t fret over the day to day changes in her intake and output. Such changes are all part of the disease and are perfectly normal at this point. In fact, we have found that even her blood sugars are falling into line without any night time insulin. I know she is much happier having one less poke in her daily routine.  I know she shakes her fist at us every time we come in to poke a finger or her belly or even to poke food in her mouth. She’s still giggling when she does it, but I worry that one day she might just mean it!! It’s been a long time since she actually spanked me!

All in all, though, she is maintaining her happy disposition and is enjoying the blessings of life, in so far as she is able to do so. She is just taking life easy now, day by day. She’s sleeping in late and being waited on hand and foot… and that seems to work for her! I guess, after all those years of taking care of everyone else, it IS her turn!

The Garden of Eden

I got an email from a friend the other day after she had read my latest post. Her mother is in her 90’s and is in a more advanced stage of Alzheimer’s than mom currently is. She recounted for me this story and, upon reading it, I asked her if I could share it with you, and she agreed.

Thank you, Linda!

“On my last visit home, my mom told me and my brother, Tom, a wonderful dream upon waking.  Her eyes got really big, and told us of a beautiful garden with gorgeous flowers, and the light was so bright.  She was sad that she had to leave, and asked us why she had to come back like this.  She told us it was the Garden of Eden, and she wanted so badly to go back.  She kept asking why she had to come back because it was so beautiful and this place was not. 

We truly believe that God gave her a peek at what was to come, and nobody can tell us any different.  Mind you, this came out of a woman who has been in a coma like state, and barely able to speak at all.  Her account was very expressive, clearly stated, and detailed.  Tom and I rejoiced at being able to be by her side as she awoke and shared her dream with us.  Afterwards, she went back into a deep sleep and never spoke again for the remainder of our time with her.  God blessed us at that moment of time that we had with her.”

Visitors

We had a wonderful visit last weekend from a family friend who actually works with the Alzheimer’s Program at the VA Hospital. She gave us some wonderful insights into what we have been seeing with mom and she emphasized that we were stressing over much about mom’s minimal eating. She indicated that the eating will come and go and that mom’s body knows what she needs. Interestingly enough, she was right… Mom is eating again! And her fluid intake has picked up, as well.  We seem to have gotten things moving again throughout her system, so we are breathing a bit more easily right now. She still has sleepy days and wakeful days, but they are all cheerful… that’s mom’s loving gift to those who care for her.

I will also tell you that mom has been having some interesting dreams of late. She has wakened and asked if we saw my dad just now or if her mother was still here. When she wakes up she is very convinced that they were really here, so the dreams must be quite vivid. As she has had these dreams more than once, I feel confident that her loved ones  are dropping by and visiting her in her dreams… and she seems to be enjoying those visits. She is not having the “visits” while she is awake, this is not a dementia event, this only happens when she is asleep, they are simply dreams. But I’m not unwilling to believe that those she loves are coming to visit her in her dreams as she gets closer to joining them. I think that’s very sweet of them and both were much loved by Mom and by me, so they are welcome any time. I only wish that I could get in on the visits.

Intake, Output and Blessings

Mom is continuing to sleep more and eat little, but the thing that has me most worried right now is that she is not going to the bathroom very much. She is not having regular bowel movements and she has always been quite regular. She is taking stool softeners every day, as well as senna, to help with movements, but she has not yet regulated. The nurse indicated that as intake of both food and water drop, bowel movements can becomes less, but she also said that becoming more sedentary is even more a factor in her lack of regular bowel movements.

Even more worrisome to me is the fact that she is also not urinating more than two or three times in a 24 hour period, although she is drinking one to two 16 oz glasses most days. In that she has diabetes that can become serious. I believe renal failure is always a worry with diabetes, as her Doctor regularly tracked her creatinine levels, which are a measure of kidney function. I am at the juncture where I have to decide if I try to force her to drink more and eat more, or if I accept that her body is deciding for itself what it wants and I need to give her peace and comfort in which to let it do its thing. I don’t want to give up on her and just let her slip away, but I also don’t want to torment her in the last few months of her life. Everyone has their opinion of what the right thing to do would be, but I suspect, in the long run, Mom will decide for herself… as she has always done.

On a happier note, in late October we adopted a rescue dog, a 3 and a half year old Doberman. She came to us with a sweet face and a gentle nature, but she was obviously a bit nervous about her new life and what it would mean to her. In the ensuing 2.5 months she has come to trust us and we have come to love her dearly.

She’s a natural service dog. When mom is sitting in her chair the dog will go to her and just lay her head on the arm of mom’s chair and let mom pet her. When I put mom to bed at night, the dog will often stay in the room, in her bed next to ours, and sleep with mom to keep her company. Whenever I get a bit stressed out or feel like I’m on the ragged edge, before I even realize that it’s happened, she has her head under my hand and her body pressed against mine. Once, when I was very frustrated with the way things were going and let my tone get just a bit too sharp, she raised her head and yipped at me from where she was lying at the bedroom door. I didn’t get it at first, but after the second time I spoke with that tone in my voice and she yipped again, I got it… I took a breath and tried speaking in a more relaxed voice. She lay her head back down and closed her eyes. I’m learning to listen to her when she tells me something.

I must admit that, on more than one occasion, I have said that it was Grace that brought her into our lives and I still believe that. She has been a source of laughter for mom, who delights in watching her play with her toys or wrestle with me on the floor, she’s company for me and she’s a delight for all who have met her. I cannot emphasize enough what a blessing it has been to have her with us at this time when things can so easily go sideways. She’s the calm and always loving heart that keeps us all grounded…  and scratching her ears! She has truly become an invaluable part of our caregiving team.

Changes and the Same

Mom is back to sleeping more and eating and drinking less, but she is still cheerful and engaged when she’s awake. A friend came in town and to help with repairs and maintenance around the house. He was able to lower her bed all the way down so that mom can almost fall into it. Now it is easier for her to get into bed, although she has a longer way to get up. There always something, isn’t there?

Her right shoulder and hand are really giving her problems. She winces when she is helped up from that side and will sometimes sit holding that shoulder awhile even when she isn’t being moved. There is a bit of swelling in her right hand now and then, but not a great deal. We are watching it to see if there is something more developing with that arm.

Our dog has taken to sleeping in the room with mom every evening for the first couple of hours after she goes to bed. It’s as if she wants to be sure that mom is in and settled before she gets up and comes out to snuggle with me at the TV or computer. I find it so endearing that the dog watches over Mom that way, but not surprising. She seems to be very intuitive and has s a loving heart. Of course, the fact that mom delights in watching her play and be silly kind of makes it a two way bond. I’m okay with all of that. I will gladly share the load of entertaining and watching over Mom with such a loving partner in care!  

Sunshine and Awakenings

Over the past few days we have had brilliantly sunny weather.  Accordingly, Mom has been much more awake and alert. She has gotten out of bed earlier and she has eaten more food. Admittedly, she most often requires help to feed herself her meals, but she seems to do just fine on her own when eating a cupcake or a cookie. I call it selective disability, or just being a woman of our family!

Now that the holidays are over and all the joyful little Christmas films have been packed away by the Hallmark channel for another year, we are back to playing some of mom’s old favorite videos. We pulled out one the other day that she used to love and put it on to play, just to see if she still likes it. It’s a movie that none of us would have thought she would enjoy and yet it is the one movie that ALWAYS wakes her up and draws her in to full engagement. Yet again, she woke up, sat up and laughed all the way through… The A Team. Go figure!

She still tires out after she has been awake for two or three hours, but she is more awake during her wakeful periods right now, and that counts for a lot in our world. She is still having issues with constipation, but we are starting to get that cleared up thanks to the attentive hospice nurse and her medicines. Apparently, it is NOT good to have end of life patients with bowel discomfort. I thought it wasn’t good to have Anyone to have bowel discomfort, but then I’m a bit of whiner, I guess.

I have to say that periods like this, where Mom is awake and engaged, make me believe that she isn’t really ready for hospice, but I know that the crash will come as soon as the weather turns, or sooner. We just have to enjoy these wakeful times and be grateful for each day that we share.

On a side note, when the Chaplain came on Friday, I asked her to speak to the Caregiver who was working that day and to a friend who was visiting to help me with some home maintenance and repair issues. Both have been struggling with Mom’s decline and transition into the Hospice Program. She was most willing to do as I’d asked and I was most grateful. This process affects more than the patient and the family; it also weighs on friends, neighbors and the caregiving staff who have become so attached to the patient over the years. I try to remember that, as I am struggling with my emotions and with keeping them in check, so are those who work with me to care for my mother. We each deal differently with the pain, the sorrow, and the worry and those differences can leave us, at times, at odds with each other. However, it is imperative that we remain as patient and compassionate with each other as we are with Mom. We are all in this together and together we’ll get through it. Mom’s loving nature should be our guide in dealing, not just with her, but with each other… and with ourselves.  

Better and Worse

Mom had a better day today in some ways; she ate a big breakfast and was more wakeful. However she didn’t eat much after breakfast and she actually slid out of bed and onto the floor this morning before I could get to her. So, from here on out, I will be sitting in her room each morning, not in the room next door with a monitor. I also went out and bought a railing system for her bed. With a very handy friend coming in from out of town this weekend, I’ll get it installed properly and we’ll try to make her more secure. We want to avoid moving her out of her bed and into a hospital type bed for as long as possible. She does better with the familiar, but her safety has to be our number one priority at this point.

Fortunately, with her bed being as low as it is, and her carpet being as soft as it is, she was not hurt when she fell. She actually enjoyed the attention from the nice neighbor who came over to help me get her back into her wheel chair. She then sat there and patted his hand and told him what a nice young man he is. She’s right, of course. The Hospice nurse was on our doorstep within 30 minutes, or less, to check her out. No bumps, no bruises and no harm done… other than to my emotional balance.

And So It Begins

We entered In Home Hospice on Monday of last week. Mom is doing just fine, but is a bit tired from having the initial visits with a supervising nurse, a social worker, a care nurse, a bathing nurse and a chaplain all in one week. We are being put on the list for a specialty nurse to come out and trim mom’s nails on her hands and feet as that can be a much greater problem for her as mobility decreases.
 
Hospice provides not only medical care and some end of life specific medicines, but it also provides useful equipment such as vinyl gloves, soaps and water barrier creams, mattress coverings and even specialized toothbrushes for her tender gums. They would have provided us with equipment, such as a wheel chair if we had not already secured one for dad in years past. We may need the hospital bed that they offer, but that’s for down the road.

All of the people who have come to help us have been very loving and gentle of spirit. The Hospice services that we are using are through Provident St Peter, a Catholic originated hospital, so there seems to be a strong faith base running through the people who have come to the house. The Chaplain is actually a Presbyterian Pastor and knows the pastors at Mom’s church. I was greatly relieved when I found out what her faith background was, as it is easier to let her minister to mom when they have a commonality of faith and beliefs. One of my caregiver’s was offended that I had questioned the chaplain about her faith training and background, but I think it is as relevant as the qualifications of the nurses and social workers involved in her care, or more so. I certainly chatted with them about their backgrounds and experience.

I am connecting with Mom’s Doctor at Madigan to find out how we coordinate the two services to see that mom continues to get the medicines she needs, but we want to eliminate any medicines that she does not still need to take. She is having a harder time swallowing the pills, even when she chews them, so what we can safely remove from her pile of pills each day we will.

Today was the first day that we could not cajole her into eating much food. She barely ate any of her breakfast, she wouldn’t eat any lunch and I had to hand fed her dinner to get half a meal down her throat. I was worried about how little she ate and I just didn’t give her any insulin tonight. I did call Hospice for guidance on the matter, another great feature of the program is on call 24/7/365 nursing support, and they agreed that I should check her sugar numbers tonight before I go to bed and if they are in a normal range then I can hold off on the insulin with such little consumption today.

 

She did have her first bout of incontinence in several weeks last night. She slept very hard today, all day. She may wake up bright eyed and bushy-tailed tomorrow with all of this behind her. Sometimes she just needs a sleepy day to get her strength up and then she’s on track again. We’ll see what tomorrow brings, because, after all, tomorrow is a brand new day!

The Parameters for Entering Hospice

I will post more on our first week in Hospice in the next day or two, but know that all is well with Mom and that we are very grateful to have this service available to us.

That said, let me first, as promised, outline for you the Criteria for eligibility for admission into the Hospice program.

1: Unable to perform own daily care and hygiene procedures (ADL’s, they call them)

2: Incontinent of bowels or bladder

3: Unable to speak or communicate meaningfully

4: Unable to ambulate without assistance/bed bound.

5: Inability or unwillingness to take food or fluids sufficient to sustain life.

6: Marked weight loss/emaciation

7: Presence of medical complications

8: Patient or family desires no further aggressive treatment or cardiopulmonary resuscitation.

In all reality, Mom doesn’t fully meet all of these criteria, but meets each of them to a level that is adequate for her inclusion in the program.  In reviewing Mom’s situation with the hospice care nurse I have come to a better understanding of what to expect, or for what I should be watching, in the next few weeks and months. Hospice provided us with a small 14 page booklet, which I will scan and post on here for you… if I can do so in a legible manner. It deals with the “usual patterns” that develop through this process and it might be helpful for any of you who plan to visit to just review it and get a sense of what to expect when you come.

Mom is doing really well through this process. She is relaxed and gracious as the hostess with each new visitor that appears at her side to chat, or run tests or scrub her clean. Although, she has jokingly threatened the bath nurse and the hospice care nurse with a fist! They both laughed and gratefully accepted the kiss on the hand that followed. Mom always was a master of the carrot and the stick… and a master of bringing laughter and a sense of comfortable welcome to guests in her home. She still is!