My husband, a very intelligent man of 68, thinks he has ADHD, not dementia. That's ok with me. He makes up explanations for things he doesn't remember. He never did like to take my word for things. We have a young adult daughter and cats, so we are mostly happy together except for occasional snappy fights. He is starting to have trouble remembering the next step of a job. Sometimes I hover around trying to coach without nagging, but how? I have experience dealing with much older, frailer people, and can see that they can't take care of themselves. But part of me still wants him to do his share (or at least a little) of the housework. Sometimes I'm more like a bratty sister than a loving wife.
Put post it notes throughout the house that read 'SMILE', 'BREATHE', 'MOVE',
I don't care how miserable things are, there is always something to laugh at--even if it is oneself:))) Watch Pink Panther movies, Jack Nicholson, Bill Murray! OMG!!!
Enjoy every morsel of your time together that you can. Also get some "me" time in each week for you. Realistically you may need to consider a care center at some point -- not because the love of your life has become too inconvenient, but because that is how to provide the best quality care you can at that point.
I was fortunate to be able to keep my husband at home with me for the entire journey (9.5 years), ending in hospice care right in our bedroom. We continued to travel and to go on day trips. I took a lot of pictures and did electronic scrapbooking to turn them into books. That way he not only enjoyed seeing the replica of Columbus ships when they docked nearby, he could also tell others about it, using the book as his reminder and prop.
It sounds like you are doing great, Mary. Follow your heart (and listen to your head, too). Getting some help as it becomes needed will support you in your decisions.
Keep in touch here. We'd love to hear how you both are doing!
It suddenly occurred to me that I shouldn't wait until he dies before I have fun! Of course I will be doing more caregiving than I would prefer to, but I can make fun-having a priority as well. My husband can travel with me, or he can be left unsupervised for a few hour or days while I travel or go to yard sales or go out folk dancing. I do feel afraid of being hopeless and trapped, so I'm trying to plan to prevent those feelings.
Your husband doesn't need to be in a NH yet, but he could go to a nice one for a week while you have a break, couldn't he? I assume all our money will go to the NH in the end, so why not spend some now?
Of course, this assumes that you have any reserve of money to spend. I know a lot of people don't, no matter how hard they worked. I encourage you to get as much help as possible so that you have at least short periods of freedom to look forward to.
I catch myself looking forward to my husband's death. I don't think that makes me a bad person, but I'd rather not feel that way. So I'll try to always have something happier to look forward to, however brief.
It is a very hard road we're on.
thanks so much for your input here. Had not thought about the possibility of a care facility that handles "high-functioning" dementia folks.
That would be my husband at this time. There are days, one would not guess his condition, all seems normal, then there are days everything comes unraveled, including my patience., and I feel like I might lose my sanity.
So now knowing about this type of home, I can search a different avenue for his day care, and gradually move into a more advanced care program, as this ugly disease progresses. I have visited a couple of assisted living facilities, and was not impressed, the residents, did not seem very mobile or aware of their surroundings, and that's not a place for him right now. So the search will continue. Thanks so much
As for his helping, he was always "Vac-Man" around the house and continues to use the hand vac. He cannot operate the CD player, TV remote, large vacuum, or an other machinery. If he helps in the garden, I can guarantee he will make a major mess of it. He used to pull up the flowers and leave the weeds, tear instead of prune ferns, trample through young beds, water the paths and not the beds, etc. Mess-ups happen in the house all the time! He does wash dishes sometimes, but I have to re-wash them. One evening I came home from work to find doggy diarhea on the kitchen floor. He had walked through it all day without noticing it, tracked it all over the house! (That was before we had in-home help, which he refused until that happened and I had to insist.)
Of course I cannot tell him he's made a mess! He becomes defensive and angry with me - "You don't know anything", "You have no heart", "I knew how to do things long before I met you", etc. etc. I'm still learning to accept that this is the new normal. Things really go much better if I let him do whatever he's doing, say nothing, and just go behind him. (Unless what he's doing is dangerous.) However, this method, while keeping peace at home, gets to me after awhile and I have to vent somewhere. (Thankfully, I have understanding friends!)
We've already done the POA and my husband is on Medicaid. I'm thankful he's still at home and still has much of his memory and personality intact. Knowing our time is limited though, helps me cope with the difficult times and appreciate the good ones. That said, this is the toughest job I've ever had to do!
Good luck, Jinx, you're in for a rough ride! Keep in touch!
Start giving him coconut oil and find out the optimum diet for preventing or slowing dementia. Crossword puzzles for brain exercise helps with abstract thinking.
Time to shift your gears about his performance, otherwise you will drive yourself nuts. We resist new chapters, especially near the end of the book.
If we can learn to adapt with Grace and say "This is the way it is NOW," we can move forward and accept life changes better. Stay calm and try to center yourself. Help him in the garden. Meditate and pray a lot. xo
I can't tell you how very helpful it was that my husband knew his diagnosis and accepted it. Oh, he was not happy with it, of course, and he went through the "why me" anger and "I wish I were dead" depression, but within a few months we both settled in to deal with the here-and-now. His doctor said, "I have to report all dementia diagnoses to the DMV and they will cancel your license. I am very sorry, but it has to be done for safety." He mourned his special edition Miata for a year, but he never tried to drive again. (He drove me nuts as the passenger seat driver, but I tired to be patient about it.)
He had Lewy Body Dementia, which involves Parkinson's symptoms, high fall risks, and extreme variability of cognitive skills.
He didn't think he needed as much supervision as I knew he needed. But it was extremely useful to be able to say, "I know you can stay alone for a while. You are intelligent and have good judgment. The problem is that we never know when ol' Lewy will take over and Lewy does not have a good memory or good judgment. So we'll just play it safe, and someone will be here while I am out."
When he was discouraged because he couldn't do something I could hug him and say, "You are just having a Lewy day, Hon. Maybe tomorrow or even later today you'll be doing better. Just relax here and watch this video about bird migration. Don't worry about anything. I'll handle it."
And we he could remember something that I didn't I'd say, "Hey, wait a minute! Which one of us has dementia?" and he'd laugh. He liked that.
Before he got on the best combination of drugs (which took about a year) and he was falling so often he hated the walker, and I didn't blame him. He would just fall down with the walker! But getting a wheelchair was a huge improvement. He felt safe. He could scoot all around the house in it. His doctor warned that he should do enough standing and walking so as not to lose the strength to transfer. Ha! As his health improved he only used the wheelchair for long excursions, and he went on to bowl with the senior league and golf with a league for persons with handicaps.
My mother has dementia and no one is telling her that. I believe that one size does not fit all on this issue. But when it comes to living with a spouse, I cannot imagine how much harder it would be if you both don't have a clear idea of the diagnosis and the limitations that imposes.
It is good when the two of you together can fight against the enemy, dementia, and not fight with each other.