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My dad has been immobile where he can no longer stay alone or get around alone for 3 years. I am his only caregiver and I am losing my mind. He constantly gives up on trying to do for himself when around me, he wakes me 3 to 4 times a night to go to the bathroom, ask for water, for something to eat, and even to tell me he has gas. I am going down quickly and I am not sure how to help him. His doctors say he’s healthy but he believes he is sick. I feel like he is a hypochondriac and I don’t want to dismiss his feelings but the constant complaining is getting to me and him. My nephew is the only other family member that tries to help and my dad makes me feel he would rather have him here than me but I am the only one to step up even though I have a sister. I don’t want to sound like I don’t care or that I’m whining but this is so hard. I work from home and all of this is beginning to affect my job. I need home care assistance but it’s very expensive. I don’t know what to do.

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I have a very simple answer. He has a bad disease. It will only get worse. His behaviors atrocious. You are being harmed and destroyed through no fault of your own. Place him immediately and start living YOUR life now.
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Welcome to the site! You'll get a lot of positive info here.

Brave of you to admit that you are in over your head. Now, time to plan.

Do you want to keep dad with you? That can be done with a carefully coordinated shift of CG's. Would you rather see him in some kind of ALF? Time to talk to his dr and get things rolling. Right now, I don't know how ALF's and NH's are doing intake due to COVID. Dad would be admitted and probably immediately put in 2 weeks of lock-down....I don't know.

You say you can't afford care, but dad must have some kind of income and that should be going towards his care. Whether it be on site at your home or in a home.

You will burn out long before he does at this rate.

Until you get your ducks in a row, DO use the family members who are willing to help. At this point it isn't up to dad to make these life decisions.

First up--a good physical and psych eval. Perhaps there are some meds that will take the edge off of his anxiety.

Good Luck...come back, others will have better suggestions that I do!
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I went through exactly what you are going through. I'm so sorry, it is very hard and it is only going to get worse. He is going to get to the point where he is going to fall more and more frequently, and where he just can't be left alone anymore. Dad is going to need a nursing home, please start now the process of looking and getting him qualified for LTC Medicaid. Please keep in mind that it may not be him not doing for himself, its the disease affecting him where he can't do for himself. Eventually he is going to need someone to feed him. Please start planning to get him into a NH.
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Lisa215 Aug 2020
i would NEVER recommend assisted living or nursing homes for care unless there were ABSOLUTELY no other options. I had gone that route with my mom with dismal results. Skilled nursing (nursing home) I only used after hospital stays to help her with mobility until that caused more aggravation than help and just had her come home and had the same care provided there. At the end stages of Parkinsons, when hospitalizations were weekly we decided to turn to hospice care at home.
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I cared for my mom who had Parkinsons. Medicare will provide some home care. I'm surprised his doctor hasn't guided you toward this. My mom had physical therapy, speech therapy and occupational therapy as well as nursing and CNA services at home. When she started to need more care, I did some research and found that with help from her neurologist I could request more hours of care from a CNA (they will help with many of the ADL'S). I would recommend looking over what Medicare provides and advocate for the most care you can from them. I also sought help from our local Area on Aging which I believe is a Federal program. I am in Prnmsylvania and we also have "Life" programs which were wonderful but have income guidelines which she did not qualify for. Medicare will also provide some respite care to give primary care givers a break. I also utilized the Parkinsons Foundation - https://www.parkinson.org/. I hope this helps.
Lisa
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bigsispjt Aug 2020
Grest advice. I am caregiver for my mom and we life in Pennsylvania where the Life program has been tremendously helpful. Sometimes having another person for them to talk to helps.
See if you can arrange transportation to take your dad to the barber ( that gives you two hours alone), or to a senior center where he can talk to others.
Can you hire you nephew for 2-3 hours a day a couple of times a week?
Even if he's wheelchair bound, perhaps the nephew can push him around, the mall, park or neighborhood. $15/hour is well worth the cost.
IMMEDIATELY, get home health through Medicare.
If he is unable to go to the bathroom alone, consider a portable potty in his room or Depends.
Will your sister committ to research? Ask her to help locate services to help you.

My mom lives 15 minutes away and has tremendous services but will call me at the drop of a hat for diet Coke or Tylenol.

I still work, too, and when she was here recuperating for a week, it was stressful even though the HHA came in daily.

DON'T try to do it all. I've found the advice of friends and reaching out for help is critical.

My sister orders her groceries, but has little involvement beyond that. I had to let go of the resentment.

Tare care and let us know of your progress. It helps us all.
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Additional bath room remedies:

- A hospital urinal bottle.
- Men's Liberty Male External Catheter.
- X stop for men incontinence Pouch.

Men’s Liberty may be covered by Medicare.

Also, there are volunteer Senior Companions who could spend time with Dad while you maybe home working.
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Hi, Dalemitch720:
I'm so sorry to see your father's situation. His Parkinson's will just get worse and require therapy and care beyond your capacities. Contact his doctor for help and I hope all works out before you burnout.
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My Dad is 93 and has Parkinson’s (8-10 years). March of this year he could no longer live alone, so now he is in a facility. What a relief. He has fallen over 40 times over the past 2 years!

His doctor had him on several antidepressants and Xanax, but one medicine made a HUG difference, that was Trazadone. Ask his doctor about it. Papa was getting up multiple times at night as well, it stopped. It was all anxiety based. This medicine was a game changer!
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Hey OP, First, I'm so sorry you are dealing with this alone. Being a lone caregiver is isolating and tedious.
If there is a local social services agency close, call and find out if there is a Long Term Care program available. This can mean having a case manager and many other supports. They may also be able to help you access respite care for your dad. Without self-care, caregivers are at risk for burnout, substance use disorders and other avoidance based behaviors. Find a local support group for caregivers. Probably everything will happen online, but I'd focus on people local to you so you can engage in mutual aid.
It sounds to me like Dad may well be experiencing mental health symptoms. I would have him assessed ASAP. I'm not a hcp but I was a professional caregiver for 20 some years, and I can say with confidence that depression is extremely common amongst folks with disabling conditions who have not yet coped with the feelings that arise from being unable to do the things one has historically done. Medication and therapy can work wonders! A support group for folks with Parkinson's might also heIp him not to feel isolated.
If you feel like you just cannot cope, please consider contacting Adult Protective Services. I did so when my partner was really ill and had lost around 60 lbs. The worker came and talked with us about resources and asked questions about his well-being. I was super impressed with their professionalism and the resources I received helped tremendously.
I know it sounds like a lot when you're already doing a lot, but I promise if you can get some supports in place, your life will improve dramatically. Best of everything,
Nat
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Sounds like his care needs have progressed beyond a "1 person" ability. You have needs that are not being met: sleep, time to relax, time to socialize (which is really hard this year). Start by letting his doctor know that he does not sleep throughout the night. The doctor can prescribe a sleeping aid so you both get better sleep. Ask your nephew to have a regularly scheduled time with your dad weekly for several hours. Use that time to meet your own needs. Ask friends and family to lend a helping hand: help clean house, pick up groceries, sit with dad for a couple of hours... and use that time to meet more of your own needs. If nobody will step up, consider paid help and check to see what his insurance will cover. The last resort may be placing him in full care residential facility where others can care for him.
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Time for an assisted living facility-- get the DOCTOR on board and have a sit down with Dad -- if you need to have him talk to an Ombudsman who will speak for both of you and help achieve middle ground so Dad does not feel ganged-up on. Call 211 for all this and go investigate the ALFs-- eat lunch there and get the tour first by yourself. Don't involve the nephew-- only immediate family is allowed. At home care is a bandaid,, skip it. He is prolly too old for it. He needs big strapping male nurses who can get him into a wheelchair, to the bathroom, and then to the breakfast room at the ALF and then help him get to bed. Also he needs medical help with his nightly peeing-- bladder meds. ( cranberry et al). Good luck-- be forthright and do not give an inch when helping him choose his new ALF home.
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