My husband, who until the last few months was walking on his own around the unit, is no longer walking without assistance and he is too confused to use a walker. In the morning and early afternoon, he will walk with an aide. They do this with him several times a day, with the aide walking backwards. Otherwise, he is reluctant even to stand up. It takes two people to get him out of the chair. I thought for a long time that he was not able to watch TV, since he seems not to see it, but after Thanksgiving dinner, he watched a dog show and laughed at the "toy" dogs. I guess he can see it early in the day, when he's not tired.
My husband did this too, myrtle. Several times he could not even stand up (and I thought he would never walk again) then later in the day he would be walking around on his own. It did signal the begin of a precipitous downhill slide with these symptoms happening more and more often until he could not stand up at all.
I also thought that he could not see well. And, I do believe that his vision fluctuated is the same way that walking did. His autopsy report indicated widespread disease in the occipital lobes where sight is located. There are no "little victories" in this disease, only losses great and small.
These are heartbreaking times for you Myrtle. I wish I could say something of comfort.
I was almost set to start a discussion on ambulation too Myrtle, but things are happening too fast around here. My partner, who needed distant supervision at home until this weekend, was walking into corners and small places and would become unable to back up or turn around without physical assistance and coaching.That was what I was going to write about. But over this long Thanksgiving weekend she has gone from needing distant supervision to needing standby and then to needing contact guard - me walking with her using a gait belt. And she has become rigid, due to lack of comprehension, to the point that I have to thrust her down onto toilet or chair. The simple things I used to say like "reach back, now. Now sit down" don't work anymore.These changes in her ability has not changed her need to walk constantly until exhausted. This, of course is very alarming to my son and daughter-in-law who are visiting for the holiday and are witnessing the decline as it is occurring. They, quite rightly, are alarmed for me, as well as for her.
I'm calling the PACE program later this morning (its only 4 AM now). I had thought I would wait to talk with them on Monday when she goes back to the day program. But the changes these past two weeks, and now the past three days, are just so rapid. She's not understanding verbal cues. She needs me to assist with feeding.Keeping her hydrated and nourished is a challenge. I think I am succeeding.) Its possible that she has a UTI and some of these changes can be remedied somewhat. But its possible, even probable, that it is the progression of the disease.
You've said before, Myrtle, that you thought your husband and my partner were in the same stages of this disease. I agree. My best thoughts go out to you. What a road this is we travel.
Llindou, I just woke up (much too early @ 5:00 a.m.) and checked this site before going back to bed. I can understand how alarming this rapid change is. Good thought about a UTI. Hang in there and let us know what PACE recommends.
Sorry to hear about your partners, Myrtle and Lindylou. If moral support is of any help, know that you've got it. I went through much the same thing with DH back in the day--as his ability to transfer and ambulate declined, he was too ditsy to remember to use the walker...I had to have eyes in the back of my head, but he had some falls anyway...and a lot of scary, tottering close calls. It's no wonder this disease turns us into basket cases.
My husband was in an ALF dementia unit for three years and it gave me a lot of time to watch the progression of the disease in different age groups and individuals. Alzheimer's is an umbrella term for a host of dementias, most of which we barely understand and cannot diagnose specifically.
I came to understand (not just know) the truth of their fatality and that the path to demise is varied and awful and sometimes painfully slow. I decided with guidance from medical people in and out of the family to not test or treat for UTIs. Death will come, bidden or unbidden, and as things go with this disease, sepsis seemed not a bad way to go. As it was, I wish my husband had succumbed to sepsis and been spared the ordeal he went through.
That said, I totally understand each caregiver's belief about treatment and pass no judgment. I did, however, want to share what I came to believe. Sometimes a terrible malady in life (sepsis in a healthy person) can be the gift of nature for a swifter death in a suffering body wracked with disease.. I've also come to see that everything, and I mean everything, is gray. There are no absolutes, only differing situations that color the actions and outcome.
Bless each and everyone one of you who are still on this road. I've been there and the pain is indescribable. May you make decisions for you and your loved one that will be the best for both of you.
Good words, marche. I also decided closer to the end to just get rid of all the specialists, not do anything invasive, work with an old-fashioned doctor who was totally onboard with what I knew were DH's wishes: to let nature take it's course, and not intervene too much. Try to be comfortable, maintain dignity, favorite foods, etc....just keep the quality of life as good as possible. (Because we all know things are going to go downhill, although what's hard to know is how long it will take.) I do have to chuckle at the way some "civilians" use Alzheimers as a catch-all word for any kind of dementia. We who have been through the wars know that there are all different kinds of dementias, and that it's important to get a good neurological work-up early on, to help with planning for treatment and all the issues that are going to come up. But how many times have you heard a "civilian" talking about an elderly neighbor or relative, and saying something like, "Oh, and I think they probably have a little touch of Alzheimers." Yeah, right.
DH had what I'm sure were a couple of UTIs over the last couple of years, and the doctor and I both thought there was something up with his prostate. But we just let it all go, as he was not in any distress.
marche*, You did say something of comfort. Your clear words, based in reality and not fantasy, calm me and help to ground me. I have a strong sense that that my husband's problems with walking are based on his problems with visual perception, so your husband's experience is instructive.
Thank you all. Not sure what I would do without your support.
Son and daughter-in-law are going home today, and I don’t like having him worry excessively about us. But the choice to worry, or to care about us without worrying will have to be their choice. I will miss their support, their help, and their exceeding thoughtfulness to my partner. Also all the hugs.
I have read with prayerful thoughtfulness Marche's and Elizabeth’s input about medical tests and illnesses left untreated. And each person must make their own decisions in this grey area. I have made some decisions:
Because we have the MMOLST (Massachusetts Medical Orders for Life Sustaining Treatment) form filled out by my partner and her doctor from over a year and a half ago, tests for UTIs are not really necessary. My mother always said pneumonia was an old man’s best friend. And perhaps this is true also of sepsis.
The name of the game must be comfort, comfort, comfort. So comfort care only. Medicine to prevent seizures, prevent panic attacks, prevent constipation, prevent pain, and allow sleep. Skip the vitamins, the calcium, etc etc. And concentrate on getting only those pills into her that she really needs.
And I will do my best to prevent falls, by being available as much as possible to provide physical support for walking, transferring, and of course toileting. When she is tired I will guide her to a chair or bed. But I will acknowledge that my best will not be good enough to prevent all falls, and I will choose not to feel guilty knowing I did my best.
And, most important of all. I will continue to take care of me. She cannot survive this. I must.
Had long discussions at the PACE program today. Ended up going with their desire for a bladder infection test so we would see what we might be dealing with. After that and a check of her vitals, they determined that very likely all the changes are all due to progression of dementia. We talked about the comfort care she is getting now, how and when it will change to palliative care in the future. I was assured it is alright if she does not eat or drink enough to sustain her, but to always have food and drink available to her, and remind her it is there and assist her as needed. Something I do already. After long discussion with MD, I got a hug from her. And assurance that the care I'm giving is excellent. A relief. It is easy to make decisions, then doubt yourself, and get all wracked up in conflicting thoughts.
I am already missing, in my mind, the walks we have always taken. A part of our life has always been the joy of being outside together. But already the walk to the car is too much for her and we are using the wheel chair to get to the car now to go out. Maybe our "walks" will include a wheel chair.
I'm hoping our "come to dinner" friends can accept my partner's new ways of eating. I am feeding her some, and its finger food for the rest, and guidance of the cup to her lips. I'll understand, I think, if they are put off by it and don't come. I am telling them in advance of each meal what to expect.
Just thinking that in trying to get a clean-catch urine sample, it is hard to do if the person is not cooperative. It isn't just a regular urine sample that they need to look for a UTI, it is the one where you clean the patient off, have them void a little bit into the toilet, then catch the urine that is presumably "clean" (hopefully as sterile as possible from the bladder, so the lab will pick up an pathogens in there), and then wipe, get clothes re-adjusted, etc. I know from years of experience with female patients that when they are confused, it is a difficult task to get a true "clean catch" specimen. If you really want a good specimen, you almost have to catheterize the patient--which is invasive, of course, and potentially super-frightening to the patient. Urine specimens are easier to obtain from men, of course, for obvious anatomical reasons. So Lindylou, I hope getting the specimen did not upset your partner. Further down the line, this is one reason people just let the UTI (if that's what it is), go undiagnosed.
Your explanation, Elizabeth, explains why they told me they finally got a "clean catch" today. I thought they had already ruled out UTI. Guess they hadn't.
Yes, Lindylou we end up with great medical knowledge.Some of the doctors are quite taken aback at what we actually do know, all learnt at a dreadful cost but hey, knowledge is power, right?
Lindylou, a suggestion for you if your partner is having difficulty or showing resistance to drinking liquids, try a straw. My husband does not want to drink - I'm not sure he sees the glass - but when I put a straw to his mouth, he drinks automatically.
I will buy straws this morning - have a grocery list anyway. Thanks Fiona.
How do we ever stay on topic, I ask you? I am starting a new tread this morning called "Virtual Travel", because, though in my case it has to do with my partner's ambulation, it also has the potential of veering way off course.