I’m never sure if he hears me, ignores me, can’t, or just won’t do. If I leave the room he’s in, he’s up into things or looking for me. I’m constantly trying to keep him safe, watching him on Blink, or arguing with him. I do have caregiver few hours a week so I can go do bookkeeping for my office. On flip side, I know he’s not himself and never will be, that it is the disease.
Such a great answer, it is so true.
Grieving process should begin before the event as we already lost part of relationship and potentially future with that person.
Anticipatory grief is good tool to get to acceptance.
That's quite normal early on, but eventually you have to move on from denial to acceptance.
Your husbands brain is now broken and will never get better. While you may think that he's ignoring you, can't hear you or won't do something you want him to, the reality is more than likely that he doesn't understand what you're saying, as comprehension is one of the first things to go with dementia. He also probably has forgotten how to do some of the "normal" things he used to do, thus why he doesn't do them when you ask him to.
At this point the best thing you can do for yourself is to educate yourself on the horrible disease of dementia. That way you'll be better prepared for what is yet to come. The book The 36 Hour Day is a great place to start, and Teepa Snow(a dementia expert)has lots of great videos on YouTube as well as several good books she's written.
Make sure too that you're taking care of yourself, doing things you enjoy as that will help cut down on your frustration.
And find a local caregiver support group as that is what saved my life while I was caring for my late husband.
Also if your husband has Parkinson's and dementia, I'm guessing that it's more than likely Lewy Body dementia as that often goes hand and hand with Parkinson's. It is one of the most aggressive of the dementias with a life expectancy of just 5-7 years, and the progression is pretty fast, so please don't waste precious and valuable time with the man you love being angry at him.
You can be angry at the disease yes, as those of us that have been there done that have, but try and enjoy whatever time you may have left with your husband, because there will come a day when you will wish for just one more day. This I know all too well.
Please get yourself some more help. A few hours a week is nothing compared to your husband's needs. Don't feel bad about it. If you have some substantial help, you will feel better and will not be so angry with your husband.
I'm sure you are also grieving your husband. You are losing him little by little. That's certainly sad.
Please take care of yourself first cuz you are no good to your husband or any one else if you're stressed out.
Best of luck.
His brain is broken, easy to say, hard to think about.
I have a friend whose hubby has Parkinson's. She has been amazing as she's cared for him for 15 years (he had some kind of electro-shock tx and it basically reset his clock as far as the disease--they were lucky).
He has just recently begun showing the signs of advancing PD. His wife is amazing. She has learned sign language, along with him, so they will hopefully always be able to communicate.
Every person's journey through PD is their own. I am so sorry for your pain. Watching my brilliant dad slowly 'lose it' was the worst thing I've ever had to watch. If I were you--I would seek to learn as much as possible about the disease and how to handle it.
And be patient with yourself and your DH.
Potentially it can reverse PD by 10 years.
Otherwise all of it is going to get worse. How fast, nobody knows, but it is always progressive.
I don’t know how you do it alone or with little help, because just dealing with Parkinson’s and complications and about 40 other symptoms, but no dementia at least is hard enough.
But he had really bad fall as well and choking episode lately, it is getting to advanced stage rather quickly, he is still independent with dressing, taking meds, making appointments etc. And mild and most agreeable person, but this cruel disease is getting to me at times. I learned to detach.
One thing I know no matter how much we watch, protect, prevent, falls will happen.
If dementia shows up, I know with decreasing motor skills, level of care he potentially would need is not possible at home.