It is 6 PM on the East Coast. A little late to be posting Monday's blog, but when you read it, you will understand. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Please post comments here. Thank you.
Joan, I have gotten a dose of Physical Caregiving this past week and a half with my FIL. Long story but I'm so glad that he isn't fightsty. I'm only 53. How in the heck do you others do this?
The "toll of physical caregiving" was exactly what caused me to place my husband. I am 61, was 60 when I placed him. Like Joan, I do not know how those of you who are 15 or 20 older than me continue to do it. If the lifting and and changing and showering and feeding had not done me in, the lack of sleep would have. I still work full time and have a bad back, I didn't have a lot of options but if I had had my druthers, I would have kept him at home.
I'm almost 75, he's almost 86, and for the last few weeks I've been out of my depth in caregiving. Before that my private-pay CNA came for two mornings a week and I was able to deal the rest of the time (I am retired but maintain a lot of outside interests, both volunteering at the zoo and maintaining databases and webs and publications for three non-profits.) I could do the dressing, the cooking, our daughter who lives with us and the CNA managed the housekeeping, yard work, etc. But two weeks ago he started having serious problems walking and putting weight on his legs and ever since has been mostly bedbound. Changing his Depends, bathing, moving him onto and off of the bed became very difficult. And his mental abilities - to talk, to recognize objects, have gone downhill. I had a recovering bad knee which has been set back by bearing the dead weight of my husband.
I called the Visiting Nurses and he was evaluated and accepted for Hospice (which is more open-ended for dementia patients). I also got some cipro for the bladder infection I discovered, and it definitely helped with his moods but not with his physical problems. Visiting Nurses arranges two or three visits a week to bathe and change him. Fourteen, at the minimum, are needed. They got me a new hospital bed which is much easier to use than before; I already had a commode, a comfortable chair, etc. A physical therapist, very earnest, keeps showing up and making him exercise and watching me move with him to get him off the bed and onto the commode or chair where he eats some meals at a little table. I attempted to politely decline a Hoyer lift in our small bedroom, and had to be a little less polite to be a bit more firm.
Over the weekend I came to some decisions: if I could get my private CNA to help about twelve hours more a week, for a total of 20, I could I THINK manage to keep him at home and it wouldn't cost as much as we'd have to pay if he went on Medicaid. And since he is an extremely nice young man, he agreed: he will come over every morning that the other CNA isn't coming, one more 4-hour morning so I can run errands, etc, and every night that my daughter's not here to help. I also am talking to the doctor to get prepared with more Ativan, possibly Risperdol, Seroquel.. behavior management drugs to be used as needed.
And that is how I HOPE we can manage without my going insane. Better living through chemistry and Andrew!
I'm 59 with severe RA in all joints, and failing knee replacements, DH is 60 and in good physical health. Although he doesn't require lifting or much physical caregiving yet, following him around to make sure he is okay and light meal prep really takes its toll on me. We have a live-in aide which makes it possible for DH to be home and for me not to kill myself. There is no way I could physically care for him by myself. LTC is contributing to the cost for the aide - I have no idea what we'll do when the LTC insurance is exhausted.
My husband has to have support when he walks. I have to put his right arm around my shoulder to help him. I have to hold both his hands and pull to help him up off the bed or his recliner. I have to feed him. I have Hospice who showers, shaves, and shampoos him. However, by the time I get him up and dressed in the morning, and shower and dress myself, and get to work, I'm tired.
Getting him fed dinner, changing him, getting him to the bed and settled for the night and medicated, has me sleeping like a baby! <grin>
However, I know that should he fall, I'll have to call the fire department down the street to come and pick him up for me.
There is a new change: the noises and voices are not reaching the brain very often. It is not that he doesn't hear, he just doesn't understand what is going into his ears. Also, his hands are becoming stiff in a position as if he is holding something even if he isn't. I try to keep an object in each hand to amuse him and also to give him something to hold on to.
The last parts of stage 7 are physically more difficult, and knowing the end could happen any day - or a year from now in a fetal position is an emotional waterfall.
Every time I start to get down, I remember Debbie Reynolds in "The Unsinkable Molly Brown" - "I ain't down yet!" (and I won't cry "uncle" either!)
Joan, I count on your blogs so much as Sid seems just a little ahead of my DH so I can see what's coming more or less. I've been thinking a lot lately about how much I can handle physically as just the hillside gardening and general lifting organizing in the house has recently had me laid up flat on my back. After years of bookselling, I have "bookseller's back" and wonder if there is a way to know how much physical exertion I need to be prepared for. (forgot to mention a knee which will need replaced in next several years.) I'm 59, he's 68 and in good physical health so far requiring no help on any of the ADLs yet.
Do I need to be prepared for having to lift him or just assist him in walking? What are the "back killers" to anticipate?
ehamilton: You say you would have kept him at home if you'd had your druthers. I'd like to keep DH at home and I am not working outside the home and my "at home" business is on hold for now as the stress of trying to concentrate in this insanity sends me over the edge.
Good for you Mary. You are doing a great job with Dave and all you have to do. I could not have did all that. I was going to say, why not let him sleep in his clothes but then I remembered he is usually wet in the mornings. Gosh, I thought I had a good suggestion for you. Any of you others with the option of letting them sleep in there clothes it does eleminate a job. Paul and Mom would wear the same clothes until bath time. (Talking about late stages now)
Joan, Three years ago I fractured my foot and broke my ankle and had to wear a boot for six weeks. In the beginning I managed tp get around by using a walker. My DH was not too helpful. After my daughter contributed several dinners, i was back cooking. I even managed to drive, since I injured my right foot. I did grocery shopping by using one of those electric carts with the stores have. After I while I was able to get around quite well without the walker. I hope Sid will be moving around on his own really soon.
Keeping in mind that I have been doing my Caregiving on braces and crutches all along, since his Dx in 2006, I have weathered a colonoscopy, umbilical hernia surgery (not laparoscopical done), a broken foot, 12 dental extractions in one trip, and an abdomnal muscle tear. Luckily DH hasn't "required" a great deal of physical help. We have an aide shower him twice weekly now. He's still mobile, though not as steady on his feet. Since he gets it into his head to do things--bring up the laundry, or take the leaf blower downstairs--the basement door is now padlocked for his safety. What has frustrated me is when he "had a bum leg" when my foot was broken, and other mild copycat maladies which require extra TLC while I am in recovery mode. Realistically, I will not be able to do major physical caregiving. Small things or one-time things we manage. Right now the biggest problem with dressing has been getting him to do it. Our daughter copijned the phrase, "Baker neekid". Lately he's spent a fair amount oif time 1/2 Bakered. <grin> Working on that.