I’ve written here before and love all the amazing, helpful ideas you all give. My DH has Parkinson’s with Lewy Body. He has bad days then good days. In bad ones, he falls a lot. He won’t sit still and constantly getting up and down increases the chance of falls. I break the rules by helping him get up (I know, not good idea on my part) and about the 3rd time in an hour, I get furious with him. I yell at him for crashing into the wall with his Rollator and falling into furniture. He’s only 120 pounds now, I’m 170, so getting him up is not too hard. But I feel like he could avoid the falls. He just won’t. I know losing my temper is wrong but I just need to vent and a few hissed “damn it’s” seem to help. I count to ten, deep breathe, relax, and still get so angry. His 2X a week care giver, two therapists, nurse, home care Dr - all say “don’t pick him up!” But I can’t call the Fire Dept four or five times a day to lift him, knowing he will just do it again. He has tremors that sometimes keep him from even feeding himself, he wears a diaper 24/7 but doesn’t clean himself enough and leaves a nasty residue on the toilet seat then refuses to shower for a week, he insists on changing his clothes two or three times a night, he confuses his medications even after I give him the exact pills he should take at the right time, he drops pills and doesn’t think it’s dangerous for the dog, he has tried to feed pills to the dog and eats the dog treats, he doesnt sleep thru the night- the list is growing every day. But if I talk about putting him in a facility, he becomes totally “normal” with no tremors and no stutter steps. His GP says he has “failure to thrive and altered gait.” His showtimers routine is perfect. I guess I don’t have a specific question, I just want to vent. I know the answer is to put him in a facility. But I need to talk to an Elder Law Attorney for money advice and that appointment is in Feb. if we survive till then. 😕
I am sorry that your DH is no longer himself. I know it must be terrifying to see him in so much decline.
I’m glad you have the appointment scheduled with the attorney.
Are any of those therapist you mentioned for you?
I have talk therapy twice a week and mostly on the phone, it really helps.
Here are a couple of thoughts from the issues you listed.
Put the dog in another space before you offer DH meds or food.
Make his food easier for him to manage. Mostly finger food. Augment it with protein drinks. If it’s safe for him to use a straw, try that. OR get him out of the house for meals.
My cousin who had both parents , one with advanced Parkinson’s, took them out to the senior center EVERY week day for lunch. She gave them a nutritional shake for breakfast, had their main meal at the senior center and cooked something simple in the crockpot for dinner or weekends.
She also volunteered for MOW and took her mom with her to make the deliveries. It was a rural area where she delivered frozen meals once a week. Her mom loved getting out. She took both of them to Rock Steady boxing classes for Parkinson’s.
Remove clutter or things that could hurt him or impede his path. perhaps you have a bedroom you can have things moved to that will make the house easier for him to traverse.
Pop on disposable gloves and go with him to the bathroom and help him clean up.
Use the large wipes to help him keep clean.
Remove as many clothes as possible from his access.
Make it easy for him to do what he feels compelled to do without making as big a mess.
Let things be “good enough”.
A housekeeper really helps.
Your post reminded me of this stressful time from my past.
Once when my dad was first out of the hospital I was going nuts because every time I turned around my mom was missing. Dad would be calling for help, I would be trying to cook, someone would come to the door, my mom nowhere to be found would be in her garden picking peas.
The time in the garden I’m sure was the best thing she could do for herself. I see that now but then it was just all too much. I was many yrs younger than she was and the confusion was driving me crazy, I can imagine (now) how she must have felt.
One time when I couldn't find her, I was making lunch, I heard a heavy knock at the door and then I heard my little frail dad from his chair call out “Come in”.
I was cooking but when I heard him say come in, I rushed to the entry and there were two big police officers standing inside the house. Instantly I thought something horrible must have happened.
They explained they were looking for a couple of purse thieves posing as vacuum cleaner salesmen preying on the mostly elderly community.
The description they had was a red SUV and two guys and a vacuum cleaner.
I said no one had been by selling vacuums. They seemed a little skeptical and asked who the red suv sitting in front of my parents house belonged to. I looked out the window and saw my Red Tahoe, cargo door up and a vacuum cleaner on the ground. I had forgotten it that morning when I arrived with groceries to put away.
Instantly feeling foolish I said “oh that’s mine”. I know I looked stressed to the max. They looked a little skeptical as they absorbed this. . I smelled something burning and ran back to the kitchen and turned off all the burners. Back to the living room and there was my mom and the two cops talking. They were explaining they thought they had found the thieves but the two men were missing. She had seen their car from the garden and came in the front door. When I saw her I screeched “There you are!” She looked up at the big men and held up her wrists as if for handcuffs and said “Will I do!”
Of course everyone laughed including my dad “Mr Come In”.
I said “Well it could have been the thieves” to him and to my mom “And where were you?!” My mom held her wrists up for an encore and got it.
Remember Penquina. This too shall pass.
One of my DHs fears is being in a NH the rest of his life. I have told him I will keep him home as long as I can care for him and he is not stubborn. I am 5ft to his 5' 10 and he weighs 70lbs more than I do. I have a bad back. Only so much I will be able to do.
But this too shall pass and there will come a day when you'll wish that your husband was still here even if he often stepped on your last nerve.
And I must say here that your husband CANNOT avoid falling as frustrating as that is for you. It comes with Lewy Body, and also vascular dementia, which my late husband had.
And I couldn't help him up. I remember one year between July and August, I had to call 911 9 times to get him up off the floor and back into bed.
Lewy Body is the second most aggressive of all the dementias with a life expectancy of just 5-7 years, so know that what you're going through won't last forever.
And when your husband is standing on your last nerve you can go outside and scream at the top of your lungs, or do what another lady in my caregivers support group did, and that was go out in her garage and say every cuss word she could think of and then she went back in feeling much better and ready to deal with her husband once again.
I wish you the very best in finding the best care for your husband in whatever way that may look.