My wife has early onset Alz. She was bi-lingual but stopped speaking english about 3 yrs ago. I do not speak her language either. For my own mental health I pretend she understands my questions and I try to interpret her response. Oddly it has been working out. We do not use any prescription medications. We did at first but it was obvious they were of no value. It is always bull answer starting with "it should.." or "we have found..". I had to cashout my retirement and quit work in 2017. We were not old enough to retire. We took early retirement for Social Security when we finally became old enough. As to finances we found that it was easier to suffer and payoff all we could to avoid interest. All the bills are on auto-pay and now someone else mows the grass. I did not seek SSI as I wanted to avoid as much interaction with outside forces. I'm busy enough already and can "guess" as well as they. What can they do in a nursing home that I can't? Ignore her. I do not use diapers on her which after a few spills has resulted in a habit of her holding on as long as she can until I figureout to bring her into the bathroom. She has begun this insane teeth grinding which I have learned to understand better. It seems to be primarily a form of expression. I found that it will subside once I figure out her need, She grinds when trying to hold her bladder, is hungry or thirsty, has an itch and so on. Or arthritis. By the way, if any clothing say like a blouse has a fold or wrinkle on the backsid try to straighten it out as this can be a source of itchiness. Kind of like when the bed sheets get bunched up. She no longer will lay down to sleep so the couch is her new home. I had to learn that things that need to be done for peace are; remove all glass pictures, mirrors or other reflection providers as they are confusing to her. I had to replace the shower head (noisy) with one of those wand types on a hose, The most benefit comes from being able to recognize comfort points such as body support for back or legs when sitting. She will NOT ADJUST herself for comfort. One really great thing is I found that she will mimic me which I found can control her mood. If I raise my eyebrows and smile OR LAUGH she does too and seems to be actually happy for a while. Laughter is a great tool. I have also found that liquid Tyenol daily (about 500-750 mg twice a day or can skip a day) has been very helpful in providing some comfort which inturn makes peace. When it comes to bathing and brushing teeth I find routine is very very important. We take a shower everyday but to avoid dry skin we use soap only twice a week. When she is on the toilet this makes her my prisoner. I then brush her teeth and/or give her chewable vitamins. Cranberry chewables to help avoid UTI's. Sometimes she goes along and other times she does not. I found out from a dental hygenist that it is better when you do not rinse out the toothpaste so its properties can work. I use a very small amount of paste for cavity fighting or whatever but it is left in her mouth. She started spitting it while sitting there. At some point I found the right amount to leave in which did not result in spitting. I have to assist with walking. If she should suddenly decide she wants to drop to the floor I have my right wrist under her armpit while using the same hand to hold her arm to keep from grabbing things to pull down. I found that when she is too heavy to hold up, I can then bend one knee behind her to stop further dropping. Eating...calories are easy to keep, it is protein that is tougher. We eat twice a day, morning is two jumbo eggs scrambled with two slice american cheese which accounts for about 26 grams of protein which is half of the daily needed for heart and all other muscles. We all get grumpy sometimes. Her too. I don't jump and try to solve everything without allowing a little time to pass first. 15 to 20 minutes later whatever was the problem is gone. Anyone have any other good coping info?
And I love your referral to her as your prisoner when she's on the toilet, so you can brush her teeth! It sounds like you are very attuned to your wife's needs.
You are so right that Routine Is Key! Including the cues that it is bedtime. I find just turning the same show on tv, giving medications with pudding, and getting myself ready for bed, are the cues my husband recognizes that it is time to sleep.
One suggestion I can make; Get a Wheelchair! It makes me nervous that you are helping her to walk, and catching her if she starts to drop! Wheeling her around the house would be more comfortable for both of you. You can help her up from time to time to walk and move around, and get a little exercise. The leg muscles will atrophy pretty quickly if not used at all.
The other thing is, why are you resistant to a diaper? Is it a matter of discomfort? Changing diapers, or pull-up pants may be easier for both of you.
Or, at least, get a commode chair that can be placed near her. Holding her bladder is not good for her.
You sound like a very loving husband. I'm sure you will learn other little tricks and tips as you continue on this journey!
Being content with our lot is a HUGE blessing, that unfortunately, isn't seen very often.
May The Lord continue to be with you and your wife, may HE bless you exceeding abundantly for what you do.
With shutting out the outside world as you do, I hope and pray that you now have a plan B in place just in case.
You write as if all this you do for your wife is just so easy and like it's second nature to you, and that you never get upset or angry, but instead just go with the flow.
If that is the case you are a rare bird indeed, because I've NEVER in all my dealings with different caregivers of someone with dementia, know of anyone that didn't get angry or lose it at times because they were overwhelmed or exhausted from little to no sleep. Myself included.
I cared for my late husband for many years after he had a massive stroke at the age of 48, and until later when he developed vascular dementia and died at home at the age of 72.
And I can tell you that while we for the most part had a routine down, it was anything but easy, and there were several times when I lost my patience with him and hollered at him. Of course I apologized after the fact, and sometimes he remembered and sometimes he didn't because of his dementia.
I believe that anyone who's been caregiving for any length of time, if honest would say that they too lost it occasionally. I'm sure even you have too, even though you may not want to admit it.
But it's ok to admit it, as that makes you human like the rest of us.
Dementia SUCKS!!! Plain and simple. And while it's good to find moments of joy where you can with your loved one, it's also good to be honest with yourself about how very hard being a 24/7 caregiver can be, and to do things just for yourself that brings you joy. Which may mean taking a break and getting away from your reality once in awhile to rejuvenate your soul.
If you don't you could end up being in the statistic of 40% of caregivers that are caring for someone with dementia will die before the one they're caring for from stress related issues. Then what?
I don't. You seem to have this all down to a science, so press on!
Look at it as preserving and pacing yourself so you can continue to be there for your wife .
Thank you for sharing some tips that can help others.
Wish you continued luck.
So surprised that in this time you haven't picked up her language.
Thanks for this glimpse into a life you still find somehow satisfying. She's so lucky in that. I wish you continued best of luck.
Are you doing everything alone or do you have outside help?
I am so sorry that you are struggling with all of this. It’s obvious how much you love your wife but you have to take care of yourself too. If you get sick who will be there for your wife?
Have you considered contacting Council on Aging for a needs assessment? They can help you navigate through this challenging situation in caring for your wife.
Have you looked into any other options such as placement in an assisted living facility? I know that you quit your job and facilities are expensive.
Wishing you peace in this difficult situation.