Where do I start? Prior to November of 2020, my Mom, while having some mild to moderate dementia and having to use a rollator walker to walk, (very slowly but surely!) was still independent to some extent. She could get around her senior independent living apartment just fine, take herself to the bathroom, and fix herself simple meals and snacks. She did have a home health aide who bathed her and cleaned her apartment. I also managed her medications. She definitely didn't require 24/7 care. Then, she tested positive for COVID-19 after contracting it at the hospital during a procedure. The COVID-19 actually wasn't that bad. She did develop a mild case of pneumonia, but she has recovered from that with no lung damage. The main symptom she had was severe weakness to the point where she couldn't stand up. I wasn't surprised by this since she always gets very weak every time she gets any significant illness (like the bacterial pneumonia she had a few years ago). Because of the weakness, I made the mistake of allowing her to be sent to a rehab facility. Because none of the local facilities allowed COVID-19 patients at the time, she had to be sent to one almost a 100 miles away. I also wasn't allowed to visit, of course. Long story short, this rehab facility didn't take very good care of her. She developed a huge sore on her left heel and also a pressure ulcer on her bottom. The wound on her heel ended up with a MRSA infection, and she had to have surgery to remove a significant amount of dead tissue. This all resulted in a hospital stay of over 5 weeks. During that time, they didn't get Mom up because of her weakness and because of the wound on her heel, but PT did do bed exercises every day. Mom finally was able to come home on February 12th, but she hasn't been the same. While in the hospital, it was a chore to get her to eat much of anything, and so, they gave her Boost supplements to make sure she got enough calories and protein for her wounds to heal. I thought her appetite would improve once she got home, but it has not. The only things she'll eat without any coaxing are ice cream and Reese's pieces. With some coaxing, I usually can get her to eat more, but I have also continued with the protein drinks and Boost supplements per the recommendation of her wound doctor. She is also quite tired, and honestly, if it were up to her, I think she would sleep most of the day. Finally, she won't even try to stand up. We finally were able to get her to do the PT exercises, but now, the logical next step is for her to try and stand. Well, she'll scoot to the edge of the chair, put her hands on the arms of the chair like she's about to try to lift herself up, and then, just say, "I can't do it" and stop. She's not really trying. She seems to be strong, and the therapist thinks she's probably strong enough to be able to stand up -- she just doesn't want to. She also outright refuses to have anyone try to help her transfer. If you do, she throws a fit. What could be going on here? Right now, we are being forced to use a Hoyer lift, and she HATES it. But, that's the only way we are able to transfer her. Of course, I tell her that if she is able to stand and transfer, we could throw that lift away, but that seems to have little or no impact (but that could be due to her dementia). Fortunately, Mom has a home health aide 8 hours a day, 7 days a week and so, I can still work. But, I've been staying with her at night, and it's starting to get trying. I feel like she is very depressed and has given up, or is acting out due to feeling like she's lost control of everything. I've been in contact with her doctor, and we've been looking at possible other causes like a few new medications, but so far, no luck. Does anybody have any suggestions? Right now, I can't even think about putting her in a nursing facility after what that last rehab facility did to her. Not to mention, she was fine back in November, and so, I at least want to give her a chance.
Although I have not seen her since October 2020, a friend who is also a medical professional visited 1 1/2 weeks ago and found her to be in better than expected condition overall than she (the friend) could have expected.
She received vaccination about a month after being virus clear in January, and has now received both doses.
I’m 76, and had a 3 week Covid infection in January 2021. I will receive my second dose this weekend.
I am so distressed to read of your mother’s terrible experience, and your efforts to help her. I can truly relate to so much of what has happened to you both. The extended period of separation is unbearable, and of course that doesn’t even take into account all the other issues regarding the virus, the additional struggles and changes of environment, just all of it.
Although you’ve made such a valiant attempt at finding answers, part of the heartbreak of Covid infection can be the maddening array of discomforts and dangers occurring from it, and the inexplicable reactions the patient can experience to what’s happening to them.
I have never, ever experienced fatigue like what results from even “mild” Covid. My sense of smell and taste constantly fluctuates. So many issues your mother is experiencing can be observed in the lengthy panoramas of Covid symptoms. There is no measurable or predictable time table for when symptoms go away. Nobody really knows.......
Then there’s the “Long Hauler” phenomenon. Again, nobody really knows.....
A long shot, but- what does she love to do most? Is there any activity or person or place that she has relished in the past? Have you tried to tempt her with some interest that she loves? That was helpful for me to regain some sense of normalcy after being sick myself.
I can tell how patient you are, but perhaps give her a little more time, and as much gentle positive encouragement as you can manage? Your observations about depression and loss of control are very relevant to feelings that arise when this happens to you.
Please accept my sincere hopes that you begin to see a glimmer of her old self. I’ll be thinking of you both.....
That's a lot to get over, especially when you're 91.
I think you might be expecting a little too much "bouncing back" too soon. I equate it to planting a tree -- it doesn't grow much in the first year or so because it's storing up energy and putting down roots to steady itself. Then all of a sudden it starts shooting up, and it grows upward. That's what I see happening here. Your mom is storing up and regaining her energy slowly because of the eating issues, but eventually she may finally raise up her head and start looking around.
Don't hassle her that she's not trying when she's doing her therapy. She's literally exhausted and doesn't have the energy. She's not taking in many calories as it is, so that alone puts her at a disadvantage. It's going to take time, so be patient. It may be several months before she's herself again, if ever.
Will keep you in my thoughts and prayers.
There is an interim measure between hoisting and standing with support from another person, called a stand-aid - Google them, let me know if you can't find what I'm talking about and I'll send you a sample link. They look fearsome but they're easy once you get the hang of them, and they are great for people who need their confidence and strength building up gradually. She'd want the sort that have the paddles to perch on.
Give her her best possible chance is absolutely right, and more power to you. Hugs.
No, I haven't heard of a stand-aid. Can you send a link? BTW, I should add that she has a lift chair, and we had the idea of lifting the chair up with the hope she'll try to stand that way. Nope! That just pisses her off.
It's hard I know to see someone we love decline so in front of our face, but the most important thing we can do is make sure they are comfortable and are getting the help they need. I wish you the best.
I will check out hospice care, though, to see if they can offer anything that Mom may not already have.
Also n.b. - we NEVER use stand-aids for transporting a person. The person stands using it, rests on the paddles, we turn her through 90 degrees, and then she sits again under control on a wheelchair, or a commode, or whatever.
What I like best about them is that the person sees some progress even before she's fully able to stand, that gives her encouragement so she's more willing to try, and if she can't quite make it there's never any harm done - at least she's tried! The first time she manages to reach both arms up and get a good grip on the handles enough to get her bottom off her chair is always a lovely moment :)
Many patients of this age sustain so much loss and so much agony and pain with illness and complications that they do honestly wish to pass. Many do not have the fight and don't wish to stay longer for what amounts to a long slow slide with pain and loss a constant.
It sounds as though at this point your Mother has given up hope. I imagine you have spoken to her doctor about options ongoing. But more importantly, have you spoken to your Mom?
I as a nurse had to listen over and over to patients who told me they were ready to go, indeed wished now to go, and could not discuss this with families. It was heartbreaking they had to take their honest feelings to a nurse who was basically a stranger. As your mother if she now would like to discuss palliative care. Ask for her true feelings, listen to her, and honor her wishes. Meanwhile tell her how much you love her, how not ready to ever lose her you are, and ask if there is any way you can help her in this current fight.
Against again.LISTEN. HONOR her wishes.
I am so sorry. It sounds as though this poor care in a rehab far away had devastating results for your Mom. It can't ever be known if there was any way to prevent what happened there. Often there just is no knowing. But pneumonia is often the beginning of the end to the elderly. Once called "The old person's friend" because it often took them from this vale of tears, it now is seen as but one more blow we can recover from or we cannot.
However, now, because of COVID-19 restrictions, I couldn't visit her, and even if I could, she was 100 miles away. So, this time, when she started to refuse her therapy, after about 2 or 3 times of that, the facility dropped her from PT. Then, about a week later after she completely recovered from her pneumonia, I removed her from the facility and brought her home. That is when I discovered the wounds on her heel and her bottom.
BTW, I'm not sure what to do about the rehab facility. The ombudsman told me back in January I should contact the Inspector General (I live in Kentucky) and file a report because that facility can and should lose their license. Especially since I have a ton of text messages from the Administrator of the facility saying Mom was fine and that they checked all the residents' skin everyday for sores. I called the Inspector General back in January but they were closed because of COVID, but I may try again.
Finally, as for Mom and her "final wishes," I have asked her about that, and she made clear she does NOT have any desire or wish to die. First of all, we're Catholic, and it would be a mortal sin. But, most importantly, she does seem to want to get better. She keeps talking about how she hopes the Senior Community Center opens up eventually (she was a volunteer and greeter there for over 25 years) and how she hopes she can go back to church soon. IMO, someone who wants to die doesn't generally talk about the future, right?
Positioning makes a difference; it's harder to push while seated farther back against the chair. And it's sometimes easier to push up instead of hold onto the chairs' arms and force oneself upward.
Another option although I think it would take some creativity to manage this in a home is the parallel bar arrangement. It might be down the line as she gets stronger, but (a) being seated in a wheelchair close to the opening end of the bars, then (b) being helped up by someone who knows how to properly do so, while (c) she places one hand at a time on a parallel bar, can help in walking.
The therapist or someone moves the wheelchair behind, so that the individual can quickly sit down quickly if fatigue or balance instability ensues.
She did actually put forth an effort a few times last night, and after watching her, I'm wondering if her fatigue is what is holding her back. If this turns out to be COVID fatigue, then it could be a good while before the fatigue dissipates and she has enough energy to try and stand and walk.
My daughter is a woundcare nurse and went to court a while back for this same thing. The family was suing the NH my daughter worked for because of pressure sores. Because my daughter was the intake nurse she showed proof that when the patient was admitted that there were already signs of skin breakdown and redness at the pressure points and the NH provided an air mattress and checked the areas regularly for changes. That the person they should be suing was the Hospital who discharged her.
He created wooden blocks to fit underneath the legs of her chair. I don't know what kind of wood he used, probably something he had in his workshop. The blocks were 3 - 4" high, and had "scooped out" depressions made to hold the "feet" of the chair legs, so they fit in firmly and wouldn't slide out.
I've decided to do the same thing for a couch as well as a loveseat that's lower to the floor. I realized this when I got up from a ladder back chair w/o any problem, but contorted trying to get out of the loveseat. The extra push was caused by the lower seats.
Perhaps something like this could help your mother, as it would require less "push" and strength to get up out of the chair. Thick blankets or pillows could also be placed on the seat of the chair.
There are some commercial risers that can be purchased as well. This is one example:
https://www.overstock.com/Home-Garden/Richards-Homewares-Furniture-Bed-Risers-Table-Set-of-4/8388215/product.html?recset=df52342d-8ef3-4cd5-9302-4e577e46d7f9&refccid=YXZ45EG7RID36W2AQDBZO6MVQA&searchidx=9&recalg=null&recidx=8&kwds=risers&rfmt=
I searched under "furniture risers" or "chair risers".
Hope this helps.
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