My MIL is currently in early Stage 3 Alzheimer’s. She is beginning to progress rapidly through this insidious disease. My FIL is her sole caregiver. My MIL can still stay at home by herself for short periods. However, I’m thinking that’s because she is aware that she forgets things. I am thinking there will come a time when she will forget that she forgets.
My FIL is often frustrated with her and asks us to “try and talk sense into her.” My DH and I know some of this comes from frustration and just being tired of having to oversee everything...although my MIL still can perform all self-help skills. Tonight he told us for the past week, she was getting irrationally angry at night after being happy all day. I suggested she might be experiencing Sundowner’s Syndrome and also suggested he call her neurologist. He brushed it off.
I know he takes good care of my MIL. But I know they often have words because he tries to rationalize with someone whose language processing skills are limited. I’m not sure how to broach this with him. Do we just let him vent and have two frustrated, unhappy people? Or should we do more?
A person can understand quite a lot about the disease and yet not have taken to heart some of the key points. It's a horribly frustrating and frightening (and, yes, exhausting) stage of caregiving, but with your support your FIL will get through, and may be quicker to recognise when he needs more help with her care.
We knew my step FIL had Parkinsons and was starting to have issues. He was in denial and was insistent that his wife was going to care for him and she "seemed" to be doing it except, upon a closer look, she wasn't. We soon realized she was having her own issues with short-term memory loss and cognitive decline, as well as physical decline. Her sons (my hubs included) seemed to be content to wait until (in my opinion) things descended into total chaos. Since we lived 6 miles from them I could see the writing on the wall. I worked full-time in our business, still had 2 kids in high school and a small grandson, helped my own elderly mom who lived next door to us, plus managed care for my mom's 2 older sisters out of state. I KNEW if no one started taking control and making critical decisions, it would become a sh!tshow that would land in our laps anyway. I worked (daily, almost another full-time job) for 1-1/2 yrs getting MIL to assign PoA (step FIL wouldn't do it), got them involved with social services and was talking to social workers almost daily, helped MIL apply for Medicaid (step FIL wouldn't do it), stopped them from driving, got MIL into a nice facility, helped the county get guardianship of my step FIL, liquidated their remaining possessions while their house went into foreclosure, and more. This is the short version of things and it may sound like a lot of effort and I'm not suggesting this is what it's going to be like for you BUT I can't even begin to imagine how much more work with much less desirable outcomes there would have been if we'd have hung back until the roof collapsed on us all.
My recommendation is to start doing more now because I don't think you'll regret it and it will be in the best interests of both of them. I hope you or someone has durable PoA for both of them. If not, this is the starting point. I wish you much wisdom and success in helping them.
A friend is living this right now. (FIL Parkinson's, cog decline, MIL afib, poor mobility). Both in/out hospital & unsafe discharges. Both lack of insight, judgement & planning. Have crossed that line from real thinking to magical thinking. *I WANT her to look after me - so it will be possible*
FIL stating his wife will do everything for him, including showering. One Doctor quipped "That wife who just left? Or do you have another one - a lot younger who is physically able to?"
You see it all the time - families buy gadgets and gizmos and dot signs around the house "remember to take your meds!" "Sit down to pee!" thinking these will assist their loved one's memory, and then become frustrated when the meds pile up and there are still puddles all round the toilet.
I have just spent four mornings with a lovely lady who, sadly, is struggling with vascular dementia. Four mornings running she has been distressed because "I didn't know if you were coming" - it has been comparatively easy to reassure her and redirect her, but it's heartbreaking to think that every morning between seven and eight she is alone in the house and afraid that she will have to manage by herself. She is certainly not able to call our office number to check that we're on our way.
I asked her if she had a calendar (thinking I could display our call time on it), and she enthusiastically showed me the talking clock her daughter bought for her - you press a button, and it announces the day, date and time. Wonderful! But unprompted, it doesn't even occur to her to use it. Of course not. She has vascular dementia.
Then (different client) there is the door alarm which plays back a loved one's recorded message, e.g. "Mum, it's too late to go out now. Please get back into bed." I'm sure this is very reassuring for the lady when she approaches her front door at two in the morning. But at midday, when she's letting a worker in to help with her lunch call? - it's just baffling.
EVERYONE finds learning to negotiate dementia a challenge. Not just elderly husbands.
The lady with vascular dementia, do you see her on a regular basis? I wonder if you could ask the daughter to buy a white board to hang in her bedroom, and write in big letters "Country will be coming (insert days you go) at 9:00, ask your clock what time it is now"
had not really understood the disease, the symptoms beyond forgetting some things or how it would change their lives in such a huge way.
After counselling she understood better. She looked for the positives too eg that currently he could still shower himself. She now understood it was progressive & that skills would be lost. She also accepted the care needs would become too much for her in their home, even with aides.
I hope your Father can gain similar help & understanding.
Broach the subject with him, because he definitely needs help. My dad finally relaxed and let me take over when he was given a terminal cancer diagnosis, but until then he bravely struggled on and refused most help. I took care of him and my mother for eight weeks, and it darn near killed me.
Get help for him in the most loving way possible.
I think you may have also pinpointed that MIL has Sundowner's Syndrome, Print out an article or 2 about it that includes suggestions for dealing with her increased anxiety/frustration, anger in the evenings. Next time he vents about this, talk about how this will not "get better" without changing something: either evening routine or MIL starting a new medication to help her relax more. Give him the articles to read and make a "date" to check back with him to see what he is doing differently and the results.
Please be aware that 75% of people 75 years old and older have some form of dementia. Monitor FIL for dementia symptoms as well as MIL.
My inlaws were a very devoted couple. She developed ALZ which progressed slowly so she was able to do her ADL's. She slept at night as well. They lived in their own house where they had been since 1957. They moved to IL in October 2018 and we sold the house. My husband is the local child, his sisters live in California so they were rarely here. Everyone thought that my FIL was doing a wonderful job and he had prided himself for years, that people thought he was much younger than his 90+ years. But it caught up to him. I am a nurse and because he is not my father, I saw his decline first. They had their POA and trusts already set up. He kept saying everything was fine and of course, everyone wanted it to be fine. I read Being Mortal and that prompted me to approach him differently, by asking questions about how he picture the future and what he wanted to happen. He had not progressed deeply in vascular dementia yet so he was able to think and make the initial decision to move to IL with her. They really needed to be in AL but she resisted and he felt his job was to care for her. They argued all the time because he tried to modify her behavior which could not be done. And she went from a sweet, agreeable woman to someone who was not agreeable at all. Really so sad but the reality is the reality.
I would start by talking to your father about what he wants, what is hard for him and how he sees the future enfolding. One thing I also learned is that my FIL could not figure out HOW to move. He said, "we can't move". I asked him why and he said, "because we have so much stuff". Not stuff he was attached to in some cases, just stuff he could not wrap his head around getting rid of. No one had thought to ask him that. I was able to get him thru figuring out what to move to IL.
When they are at the point your LO is at, it is overwhelming that the fate they feared is happening. There may be good years ahead still but they will need to make changes to make that happen. It is scary and depressing. And I can understand the resistance.
He may not say this. He probably would deny it. He probably would refuse help.
I can tell you from first hand experience that it is not easy being a sole caregiver.
The first time I had a caregiver some in and I had time to do some things myself I thought I won the lottery. I got shopping done in half the time. But I did miss him by my side. I loved the quiet ride. But I did miss the noises he would make. (I know sounds odd but you get used to things like that.)
As long a MIL now understands some things it might be good to have someone come in so that she will be used to someone helping out.
Introduce a caregiver as a friend. Or say you are getting someone in to help with cleaning, the laundry, meals. Whatever works. You can start out with 1 day a week or 2 half days to ease into it. As she declines he will need the help for longer periods of time.
The time may shortly come when she should not be left alone for even a short period of time. You just never know what may happen.
Another option might be Adult Day Care if there is one open in your area. That can be a great help. My Husband was in one 3 days a week and it was great for both of us. (until I was asked not to bring him back because he kept trying to leave)
If you or your husband could come be with her for a few hours a day once or twice a week that might help him as well. And the longer you stay with her you can get a better idea as to how her decline is. (although a few hours does not give a true picture it can help)
A few suggestions for him.
*If he gets very frustrated with what she is doing or not doing, if it is safe leave the room. This will give both a chance to change the focus of what is going on.
*Redirect a behavior if possible. Give hands something to do. Fold towels, color , get a magazine and ask her to cut out recipes, clean out the "junk drawer" in the kitchen (everyone has one!)
* LAUGH. When you want to yell, laugh instead. Totally catches them off guard and they end up forgetting what the focus was and they laugh. Easy to redirect then. (found this out by accident once when the situation was so ridiculous that I wanted to scream but I just burst out laughing, changed my Husbands manner)
*Learn to accept help. People WANT to help they just don't know what you need. so tell them. Have a list of things that you need from the store. When someone calls and wants to visit say "sure tomorrow at 11:30 would be great, you can join us for lunch and "Betty" is much better in the mornings, but would you mind stopping and getting a gallon of milk and a loaf of bread for me".
People want to help and by refusing the help that is offered you deny them the pleasure and satisfaction they get from helping. (does that make sense?)
If dr can help with a med to keep her a little calmer at night, it may avoid some of the bigger issues happening in the evenings.
It is very common to try and 'talk sense' into the dementia patient. Break it down to dad that her brain believes what it believes because it is broken. You can't fix it. There may come a time that she will become physical. If dad is doing this 24/7 think on his own, he may be wearing out. Breaks are going to be important for him. Perhaps you could make the appt and talk to her doctor. Many are doing it online now. I would send a letter in advance to describe the evening behavior so he understands what is going on prior to the appt. Mom and/or dad may tell him everything is fine if you leave them to their own doing in the appt.
The time when someone with dementia shouldn't be left home alone comes on pretty fast in my experience. If you are dealing with a caregiver who is having trouble accepting the diagnosis, be extra careful on letting him be the only one deciding that is is safe to leave her alone in the house.
It's also very hard for a loved one like your FIL who's known his wife for 50 years (or whatever) to see her change like this. To say something to her and have it not register, after speaking to her in the same way he's spoken to her for 50 years, but now, all of a sudden, she doesn't get it. WHY? What the heck is going on, he's shouting in his own mind? While he may realize she has Alzheimer's, it's likely he doesn't understand what all Alzheimer's involves. The details of what's going on, or not going on, in her mind. He gets frustrated b/c he can't get through to her. It feels seriously annoying at times to be saying the same thing over and over............and you think to yourself, OH COME ON, this can't be REAL! NOBODY is that dense!
So that's the other side of caring for someone who's suffering from ALZ/dementia. Their perception of what's going on. It makes no sense.............b/c it really doesn't make any sense. And THAT is the frustration in and of itself. Trying to create 'normal' from 'abnormal'. Applying HIS sense of logic to something that's totally illogical. Expecting A but getting B, you know what I mean? Expecting her to be the wife he's known and loved all these years, yet getting a stranger a lot of the time, and someone he can no longer relate to.
And it seems to me, from experience, that men tend to stay in denial about this situation a lot longer than women do. If he brushes things off or under the rug, maybe it will all go away and he'll wake up tomorrow to 'normal' again. Except that's not going to happen as the disease progresses, and acceptance is the key to getting help and figuring out the next course of action.
Here is a link to a useful article about AD and the stages and what to expect during each:
https://www.healthline.com/health/stages-progression-alzheimers
You can also go to alzheimers.org for lots of good info and for their 800 number for someone to talk to about all of this. Lots of resources are also available on their website.
Finally, your FIL needs help with daily care for his wife. Nobody can do this alone. AD reaches a point where most people can no longer handle it at home anymore, and placement becomes necessary. Keep all these things in mind as you yourself learn more about AD and what your FIL and the rest of your family face with the care of your MIL.
Good luck!
My grandmother did an excellent job of caring for grandpa because they didn’t want to bother their 6 children or 19 grandchildren! Then grandma broke her hip and went to rehab. Grandpa, age 91, was left home alone until my mom discovered him lining his pills up on the counter trying to figure out what to take. Oh yeah, and wearing his underwear outside his pants.
What her husband is doing is admirable but he is only going to be able to handle this for so long. The three of you Husband FIL and you need to come to some agreement as to what is enough and too much and when you get to that line you need to already have the plan in place as to what your going to do with the MIL, IE a facility. I will tell you my wife dragged out moving her Mother to a facility WAYTTOO LONG. It took our marriage and our family being demolished and her finally getting to where she could no longer do it alone ( No one would help her because her Mother had become so difficult to deal with)to move her to a home. Her Mom fought it but after about 2 weeks at the facility her Mother was sooo much happier. She was around care givers that knew how to handle her situation, She had other people in the facility to talk to and create friendships with. She was no longer isolated at home.