Second marriage for both of us and now going on 20 years. He had PD when I married him but was told not really a concern and certainly dementia was never considered a possibility. I resent not getting the full picture in advance and now am stuck as his full time caregiver as I approach my 77th birthday. I’m working harder than at any time in my entire life, coping with his incontinence and bed wetting. I yell at him constantly and verbally abuse him. I’ve taken him to numerous doctors to try and help with all the UTIs, dementia, etc. Nothing helps and there is no respite care during COVID. Plus if it does become available it’s is far too costly as they all require at least a month. Our condo is 850 sq ft so hardly room enough for another person to come in. We would all be on top of each other so what would be the point? I just feel horrible that I’ve become such a nasty person and frankly I’m stuck. He’s competent enough where he refuses to even consider alternate arrangements. Just need to get this off my chest. Looked into hospice and he was “borderline” so not acceptable for their program. Palliative eval this week. By the way he’s had PD for 30 years! I know it’s only going to get worse. We can’t afford long term care and yet don’t qualify for Medicaid. So it is a no win.
We have many posters who seem to have quite reasonable relationships with ex-spouses, with or without actually living with them. The bit of distance helps to settle things down, and divorce doesn’t necessarily lead to emnity. Just something to think about.
As far as his incontinence is concerned, please talk to his urologist about either getting a condom catheter, or a supra pubc catheter(which is a permanent one), as that will certainly make your life a little easier, as you will then only have to empty his catheter bag a couple times a day, and won't have to worry about wet bedding and clothing all the time. There are also many different kinds of medications to try and help with incontinence, and a procedure can be done where his urologist can put botox in his bladder to try and help as well. My husband tried all of the different medications along with the botox, and because none of that worked for him, ended up getting the supra pubic catheter put in. It was a Godsend for me, as I only had to empty his bag twice a day.
Please take care of yourself and make sure you are taking time away from your duties as a caregiver. It will do you a world of good.
Best wishes.
If I knew 52 yrs before we were married that my wife would eventually die of AD, would I have married her? That my caring for her would result in my depression, feeling of isolation, fear for our future and even hopelessness, would I have married her? You bet!!
Is your constant yelling at him and verbally abusing him working for you? As you know, this situation will worsen, what then? If he's borderline hospice, he'll qualify for palliative care. And why is it that he doesn't qualify for Medicaid? Your post doesn't paint a picture of wealth, and income is seldom a disqualifier.
Oddly enough, I do empathize with your plight. But you're not stuck! Your situation requires a change in attitude, more respect for your husband and what he's going thru, your willingness to educate yourself about his PD and dementia, and to get the necessary help you both need. Call your local Area Agency on Aging to get started.
ask for guidance... and pray....
breathe, breathe and breathe... walk away for 5 minutes or more, if you need it...
UTI's call your local pharmacy.. they can suggest over the counter tests, and they may have helpful advice to lessen the uti syndrome.
yelling at someone doesn't work, especially if they cannot help it... well, it didn't for me... if they have dementia on whatever "level" it is... ... you know... it is even harder...
can he walk? if you walk him, do you use a gait belt? gait belts help...
double upon the bed pads, if one gets wet, the other still may be dry enough to just remove the top layer.
* check out the Parkinson's Resource Organization website great information and support for caregivers as well as focused informational virtual town hall meetings which include presentations by experts and interactions with others dealing with PD
*talk to your neurologist about the medication Nuplazid for the hallucinations/dementia ( made a world of difference for my husband)
* as COVID restrictions arrange with a family member or friend to maybe stay with your husband for an hour or 2 so you can go out for and get a break. My husband is ok by him self for short periods so I go to my exercise class twice a week. Good for my health and gives me a break.