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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.

Hi, try getting him into adult day care if you can. They have activities so it may bring him some happiness as well and will give u a break. They do take people with incontinence issues. Through his Medicare or Medicare replacement insurance there is usually free transportation to the daycare and medical appointments Also some assisted living facilities are licensed to take people on a daily basis for a few hours to give you a break. If your husband is a veteran there is a program called aid and attendance through the veterans administration that will give him money to hire an aide or you could use it for daycare if you want. If he is a veteran call your local veteran service center ask how you can get it. Call some adult daycares and ask for the administrator or call assisted livings and ask to speak with the administrator and ask them for advice on what you can do. You may very well qualify for Medicaid because from your post with a small apartment it doesn't sound like you have a large income so you may want to check with a Medicaid and apply again. And also pray and ask for God to help you and your husband and give you both peace. Many blessings.🙏
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Reply to Cookie201
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We have been living with husband's PD for almost 20 years I can recommend/suggestions
* 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.
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Reply to Mermal
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Let me get this straight; he's had PD for 30 yrs and you've been married for 20. At the time you accepted his PD but never expected dementia. (By the way, dementia is common with PD). Additionally, you resent not getting the full picture in advance and now you're “stuck” with him. I wonder who could have given you the prediction of your future. If the tables were turned would he be stuck with you, or would try to understand your illnesses and be willing to care for you? I don't know, just asking.

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.
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Reply to sjplegacy
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funkygrandma59 Apr 13, 2021
Well said sjplegacy.
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Call the Parkinson's Foundation at 1 800 4 PD INFO for free booklets and advice, and ask if they can help pay for a brief period of respite care.
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Reply to vegaslady
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I can feel for your situation. My husband is diagnosed with not only Parkinson's, but also Marfan syndrome. He is starting to show dementia. I am diagnosed with various health conditions including SI joint dysfunction, osteoarthritis, osteoporosis and sleep disturbances due to his involuntary movements. It is very costly as you have stated to have someone come in for respite, and Covid-19 is complicating matters as there isn't much help. You need to remember your health is also important. I have checked into a nursing home for me to receive some respite for myself. Medicare will allow up to 30 days. We have places called American House here that have respite stays for the ill person. In other words your husband would stay there for a few days while you get tour composure. I also highly recommend getting in touch with support groups and possibly a counselor to help you with your anger and frustration. It isn't unusual for your feelings, but, you need to to get help. Care providing is a 24/7 job and many do do understand your situation. This is why I suggest support groups.
Best wishes.
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Reply to thingsarecrazy8
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This is terrible for you both. He can’t help his situation and you’re beyond burned out as a caregiver. Neither are anyone’s fault but certainly need changing. Does your husband have adult children you could contact to help come up with a new plan? Have you contacted your local Area Agency on Aging and asked for help? Please let your husband’s doctor know that this has become too much and you need help. Don’t accept that this is the way it has to be, it’s too detrimental to you both
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Reply to Daughterof1930
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The only way you are going to be able to continue on this caregiving journey, is if you hire some outside help in, and take time away for yourself. You say your condo is too small for more people, so when the hired help comes in, then you leave and go do something just for yourself that you enjoy. It can be as simple as going to get a pedicure/manicure, meeting a friend for lunch or supper, going shopping or to church, or just going for a walk around your neighborhood. And yes, you can do everything that I've mentioned even with Covid still somewhat lingering. You MUST make yourself a priority in this scenario too. Otherwise you are seeing how not doing that is affecting your attitude, and causing your resentment.

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.
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Reply to funkygrandma59
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tell doctor you need a break,, can he go into a nursing home for 30 days on medicare? My friend's mom had her hubby put into a home for a month.. doctor and insurance approved it... and also this was over 15 years ago... rules may have changed... but it doesn't hurt to inquire.
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Reply to MAYDAY
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pray, pray pray

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.
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Reply to MAYDAY
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How does DH feel about you? Is he just putting up with your bad temper, or do you just hate each other? If your apartment is very small, it may be that you don’t have much money between you. If so, divorce really might be a good option. It could take the burden off you, and he could go to AL – it’s a big step from hospice!

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.
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