New caregiver of 89-year-old father-in-law with progressive dementia... looking for support and advice...

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Hello! New here and to caregiving and after reading some of your stories I guess I shouldn't complain that much. It does help to know you're not the only one going through this. I admire and feel for so many of you after reading your stories as we've only been doing it for full time for four months now and I'm already going crazy. My father in law is 89 years old. He had been living on his own since his wife passed away almost 15 years ago. A very independent D-day survivor and snow bird (Wisconsin/Florida) for many years. Lately my husband (a dialysis patient) and I would go to his house to cook meals for him and check on him at least once a week but about eight months ago he had some small strokes and the Doctors said he couldn't live by himself any more. He was already falling and forgetting to take his medicines before the strokes but now has short time memory and progressive dementia. My husband and I lived in a small one bedroom apartment and Dad's trailer house wasn't big enough so to be able to take care of him we all had to move to a bigger house.My husband's son had just moved to Florida recently so he also moved with us to help take care of grampa. My husband spends most of his dialysis off days on a wheelchair so having his son here with us is a great help, although he's young, working, and now going back to college so he's not here that much. My father in law has always been wonderful to us and taking care of him now that he needs us is the least we can do for him so I try to be extra patient and caring but some days we feel we're going to lose our minds with his. He knows who we are and when we remind him what's been going on for the past months he seems to understand and appreciates us but keeps forgetting he can't live by himself any more and asks to go back home almost every day. The other day we were most of the day out with him... and when we got home he though we were visiting and leaving. He had forgotten we've been living together. He forgets and refuses to use his walker a lot. Right now we're lucky last time he felt was father's day. My husband has dialysis three times a week so right now I'm the main caregiver. He can still dress and wash himself but I fix his meals, give him his medicines, keep him company and safe, while my husband takes care of his bills and important financial matters. Some days it's not bad at all... he's normally always making jokes and in a good mood but other days his mind is so bad he drives us crazy. His VA nurse is coming tomorrow to suggest what to do about him sneaking out of the house to catch a ride with someone to the airport. He had told us he did this once and we thought he was making it up but the other morning he scared us when we couldn't find him and realized he had gone for a "walk" by himself. Thank God my husband's son was here and found him five houses down.. but a worker on the street told me he was asking for a ride. Last night we took him out for dinner and he yelled at the waitress. He orders and forgets what he ordered. He already lost his credit card once. Right now he's asking my husband who just got home from dialysis to take him to the bank... that he needs money to buy an airplane ticket to go back home. My poor husband has to repeat the same long story of why he can't go back home by himself over and over almost every day. I love hearing his war stories, how he met his wife, and talking to him but some days I'm tired and it's hard to sit and hear the same stories again and again. I miss being able to go out with my husband... just the two of us. I love our new big house but sometimes I wish we were still back in our little apartment by ourselves. Again, we're so grateful to Dad and we love him so much... but my health is not that great either and somedays I can't imagine living like this for years without going insane or losing what little health we have left ourselves. Oh, and especially when I know this is just the beginning and things will probably get worst. God help us all!


Is there a Senior Center he could go to a few days a week, does he have any friends or perhaps his grandson who could stay with him one evening a week so you and your husband can have a night out. It's very important to schedule personal time for your own sanity. Best Wishes!
I'll echo TheFixer: "It's very important to schedule personal time for your own sanity." You absolutely must arrange some respite from full-time caregiving.

Often a regular Senior Center is not suitable for someone with dementia. But an adult day health program can be a lifesaver. Look into what is available in your area. And getting out with your husband while your son stays with Grampa once a week is a great idea. Just as you looked at what you would need for housing to keep FIL with you and then did what needed doing, you also have to look at what you need for respite and then do what needs doing. Respite for the caregivers is not optional.

As FIL is losing his ability to remember and to reason, you have to stop relying on reasoning with him. This is a very hard change to grasp at first, but you'll become very adept at it quickly once you start. Repeating the long story of why he can't go home by himself is hard on your husband an doesn't really do anything for FIL. Keep it short. Acknowledge FIL's feelings. "Dad, I wish things could be like they used to be, but we now live in this nice house. I need you to keep my company here tonight. We'll look into that plane ticket tomorow. For now, I'm ready for some ice cream, how about you?" or "It's a bank holiday today." or "I'm really sorry Dad but I'm too tired to go to the bank right now." The whole long explanation of why getting a plane ticket to go home doesn't make sense is just not serving any purpose. FIL is not able to accept the reasoning and won't remember it. I know this is hard to get used to ... even after nine years I sometimes get fooled into thinking that my husband is "normal" enough for some explanation. But the more you can accept FIL as he is and not expect him to function at his former level, the happier you'll all be.

Have you applied for Mediciad for FIL yet? What is his financial situation?
Marirosa, welcome to at home caregiving, I also have my Mom with my husband and I. When my Mom moved in at 86 she was about like your Dad, laugh and enjoy! Then the wandering and aggitation started but I was prepared and had high chain locks on all doors including the basement door. My Mom started getting agressive and tried to get out a window aewyiyi, it was tough. Poor Mom, so unlike little shy Momma. They all want to go "home" even if they are home, they are just looking for comfort because we took Mom home and she did the same thing there. You are just beginning, dont be surprised that he may get aggressive and pee on your floor, its all just a barrel of fun, but he was good to you as you said, as was my Mom, so that doesnt stop us. You can make or just buy unstrippable clothing until this stage passes and dont be afraid of the medications to help, if he were in a nursing home they would do the same. I used daycare for over 2 years because I also worked fulltime but then she had strokes and couldnt walk and had to be home full time .Dont let these stages get to you, you can solve them all and if you need medication to calm his brain at some point there is some safe good ones to use, You, and he, will feel better because they too, dont want to be aggitated. I will tell you the best thing that I learned , late, was to hire help at home. I now "pretend" (even though it is!) that this my fulltime job and I have time off. I hired a part time woman to help with bathing (you dont need that yet), and a weekend person so my husband and I can have a life. (We went years without) Hopefully your Dad gets ss or the A&A and you can hire someone when you need to. Knowing you have off a day or morning or two is a help but knowing you have off the weekend makes you a better caregiver. I bathe my Mom saturday and sunday mornings and around 11am someone comes in to take over with the feeding, singing, and changing, etc. When I come home I also bathe her again, a quicky, and put her to bed, but its still "time off" and worth it. My weekend person cannot lift or use my hoyer lift so I do the hard work but still enjoy our time off.
Glad you joined us, ask away if you need us and good luck to you!
P.S. there is a free book you can read or download and print online. The name of it is Coach Broyles Playbook for Alzheimers Caregivers which a husband wrote all about his wife. I saw him on TV and he wanted people to learn from his experience, not make money.
Also make sure your FIL's B12 level is ok and on those days he is more confused he might be a bit dehydrated so keep him drinking if you can. Soon he may ask for his wife and you will begin with the "theraputic lies" saying she is on her way home and he will believe you. Hang In There!
Let me start by saying that you sound like such a lovely family. This is what families ought to do. The early stages of dementia will drive you nuts! My grandmother lived with us and now my mom and in the early years, they are so confused and you have to watch them like a hawk. What I suggest is that you hire someone to come in and give you a rest here and there because honey, you will need it. Even a very responsible older teen can be very useful. I have used some who want to be nurses or doctors in the future and this is a wonderful chance for them to get some hands on experience with what kind of patience they will need to develop.
You have your hands full. I do think that the stage you are going through now is one of the hardest, and the other responders have given good advice. Again, don't let your own health fail, as you also have your husband to care for. A friend who had cared for her parents advised me, "Pace yourself."

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