Last June I had to put my husband in a nursing home. His father had Parkinson's disease and I think he didn't want to be diagnosed with it so he refused to go to the doctor for 30 years unless it was an emergency.
Over the past 15 years he had gotten to where he could barely use his hands, which he told me was due to typing all the time at his work. I didn't think that was it, but who am I to argue? Over a couple of years, his walking got slower and slower and he started shuffling and still refused to go to the doctor. Then 2 years ago, he started losing weight and lost about 100 lbs in a year and still refused to go to the doctor. He got to where he couldn't hardly get off the couch and needed me to help him adjust himself etc. Basically, help him sit up, get up, roll over, assist him walking, etc. and he still refused to go to the doctor.
Last Feb. 2021, I fell and broke my arm and wrist having to have surgery. So, I couldn't haul him around so much. Then after my arm was better, but not healed, he started falling and I couldn't get him up. We had several ambulance and hospital ER visits to make sure he was ok and hadn't broken anything. He also started having some delusions and forgetfulness several years ago.
I finally got him to agree to go see the doctor and he was diagnosed with high blood pressure and diabetes. We were sent home to come back again in a month. Well, he fell again and the er doc said to go back to the doctor for follow up. I saw a different doctor in the practice and he set us up to go to an intensive rehab place for 21 days of 3 hours of rehab a day. There we discovered that he was incontinent (at home he used a pee pot and the mess he made, I thought was from spillage due to his hands) and they put a catheter in because he couldn't pee. It bothered him so they sent him across the street to the hospital where he was admitted for an infection called sepsis and was in the ICU for a few days. They did a bunch of tests and discovered he had a mass on his pancreas, but despite 85% of pancreas masses being cancerous, we got lucky and his was benign.
Then when they got ready to discharge him back to the intensive rehab, the therapists from the hospital and rehab decided he needed to go to a skilled nursing facility.
So, he was put in a nursing home. He was still losing weight when he got to the nursing home. There he collapsed while walking with a CNA, he did not fall, he collapsed because his hip broke. The hip doctor said that he was a very sick man and that it wasn't unusual for older patients in ill health to break their hip while walking and that causes them to fall. He had his hip ball replaced. Then 3 weeks later, it came out of socket and he had to have it put back in. Oh and when he had the hip replacement, the infection in his kidneys/bladder was back. They upped his antibiotics and when we went for the second surgery, his bloodwork showed it was clear.
They finally got him to stop losing weight and he has gained some of the loss back to where he is at a healthy weight now. But... he has been diagnosed with Parkinson's which I thought he had all along due to his Daddy having it and the progression of not being able to use his hands and walking etc.
He has delusions and thinks he is at home, there are chickens in the kitchen, all kinds of strange things. He knows what a nursing home is and can't comprehend that he is in one sometimes. Anyway, he knows who I am, but... he is confused about so much. My husband has always been extremely smart and has a PhD. He was a great conversationalist and up on what was going on in the world. Since being in the nursing home and before even, he is not the same man I married. I feel sad every time I see him for the loss of such a mind. I feel like I am a bad wife. The nursing home takes great care of him and lets me know everything, but... I hate going to the nursing home and it is hard to go visit him. I am sad and feel like I have lost him.
That shift in my mindset really helped me the last few months of Mom's life, because she just became less and less a person I knew. It's what got me through to the end, and I was glad to have not given up on her.
You'll realize later after he's gone that the husband you loved "died" a long time before his body died, and you'll understand that you're going through your grief now while he's still on the earth. It's a very strange feeling, because you feel like proper grief is supposed to start when the person dies. I still don't feel like I properly grieved my mother even though she died last July. However, my brother wisely pointed out that she'd been gone for years and we'd grieved a bit every day already.
Try not to dwell on what's gone and live in the moment as much as you can. It isn't the way it was, but it's the way it is and there's value in that as well.
Can you imagine how lonely he must feel. Can't you give a part of you up
to make him smile, or at least to feel cared for? I realize you went thru a lot
with him...but imagine being in the nursing home yourself and not being
visited because people only thought of the way they felt?
It would be wonderful of you to go visit your husband. Even though he
doesn't seem like the man you married....he is!!!!!
Wander"
Before leaving guilt inducing remarks, you should read what is actually said! If you are 'empathetic', try leaving empathetic comments!
Try to laugh with them as much as you can. Do enjoyable things like games and puzzles. Bring your husband's favorite music. Tell him stories of old, good memories.
We are with you and we understand your pain.
THAT I CARE ABOUT....IT'S NOT ABOUT ME....I DO IT FOR THEM, THEM,
THEM.
My husband too has worse and worse progression of PD,
it seems like every week there is something new, but with him is physical symptoms. Cognitively he remains unchanged, also extremely smart, but his interests are diminishing as he is getting tired easily, increase in medication and additional strong meds for pain make him sleepy, day and night.
He tried and tried, PT, every treatment, diagnosed in 2015, I suspect it was there already for maybe 5 years before diagnosis. I went thru trying to do everything to now feeling more of taking care of myself and getting my life back and interesting, realizing with this horrible disease there is no cure and everything gets worse. So I am at the point of anticipatory grieving, it does not mean somebody is dying immediately, although possibility is greater with each stage, I am coming to acceptance. One professional told me to distance myself.
Hope you can find your coping skills too.