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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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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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Same situation. Can you be unavailable at night if he doesn't really need that assistance and ask him to wear incontinent pads? Anxiety meds will help along with positive feedback on how well he manages simple tasks. I take myself away for 30 minutes and do something that lifts me up such as crafts or reading positive mantras. Just doing simple things like that can keep you going for another few hours. Heart goes out to you, good luck
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Consider looking into his diet. The lowering and even removal of high-sugar and high-starch foods benefits the mood and overall health of some people. Is he getting enough dietary fat and protein? Foods like sardines can sometimes help.
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newbiewife Aug 2020
If OP's dad is taking the usual medication for Pakinson's (carbidopa/levodopa, i.e., sinemet) a high protein diet is contraindicated. Protein competes in the brain with the med., making it less effective. That's why it's recommended to take sinemet an hour before or 2 hours after eating. Reducing refined sugar and eating "good" carbs and fats is always a good idea, but some people with Parkinson's find having a lower protein diet is also helpful.
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Hello, I know exactly how you feel. It can be very overwhelming. I ended up leaving my job and am helping my 88 year old father. We have had our differences but we talk it it out and come to an agreement. I'm sure you do everything you can to help your dad as I do. I have had to explain to my father that if he went into a facility he would not get the personal care that I give him. I think he understands that now and appreciates me more. I had to explain to him that he needs to work with me to make this work and he knows he's a lot more comfortable at home than sitting in a nursing home. I can't stress this enough, you need to take care of your physical and mental wellbeing! My spiritual life has helped me immensely. You need to take time out for you to recharge. I'm here 24/7 helping my father too but I'll give myself little breaks. I'll cook something good, play music or go out to the garden. Sometimes I'll go out for a ride just for some quiet time and to gather my thoughts. Do something fun that you enjoy. It can't be all work. I know it can be very daunting. I worked 3rd shift and tried being a caregiver, started to burn out very quickly and having panic attacks. You don't want to get sick because then you won't be able to help anyone. Try networking with people. Maybe there is a friend or neighbor that could help out. I know it isn't easy and the pandemic makes it even harder because you don't want your elderly parent getting sick. I wish you the best and hope this helped.
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Rebecca1033 Sep 2020
Oh how I admire you! You are a good person to be able to keep such a loving attitude. I understand that you must have difficult times,even very difficult times. Keep on praying.
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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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You need to take care of yourself first. Maybe take a week or so away and let your nephew handle things. It would be good for all of you.
Your dad might see things different if you were not there to complain to
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You definitely need help from other caregivers whether its an agency or seasoned sitters from a church. I used a combination of both for my parents and an aunt. They have provided a great deal of support and help without breaking the bank. What assets does dad have? Did he have a home? He has to let go of some of his savings or whatever before you lose your mind and health. Great advice below on home care set up by primary care doctor. My dad had speech, OT, PT and a visiting nurse that was covered by medicare. Best of luck to you and hold on......help is coming.
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After reading some other responses, I thought of a couple of other things. Does dad have a neurologist? I would highly recommend finding one who specializes in movement disorders and would do this over using a psychiatrist. There are meds for Parkinsons that a neurologist is more qualified to prescribe over a psychiatrist. Also, if dad is a Vet, there is a benefit called Aid and Attendance which he may qualify for.
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he may be frustrated and depressed over his condition. Have you tried asking his doctor for an antidepressant?
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when I read this, I’m amazed at your perseverance in taking care of your dad for 3 years alone. But now it’s too much for you - for ANYONE - to be working round the clock to meet his needs. Others here have given some great advice about possible resources, but however you do it, you need to get others to provide care to your dad. This might be hiring home care aides overnight and occasionally during the day, or it might be placement in a nursing home, using Dad’s assets, Income, or eligibility for low-income services such as Passport, a state Medicaid waiver program for home care services. These options have pros and cons, but singly managing it yourself is no longer acceptable. We don’t owe our parents complete sacrifice of our own health and quality of life. Please consult with the Area Agency on Aging or a geriatric care manager in your location to get started and also consider getting some support/counseling for yourself. Many therapists offer Telehealth now. My father also drives me crazy but he is in assisted living and I can’t imagine trying to manage everything without the care and supervision they provide. Best of luck!
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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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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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1st thing, talk with your Dad about it and let him know exactly how you ferl while letting him know that you understand his frustrations too.

Aso him if he wouks be happier in a Senior Home.

Let him know that changes need to be made for him to continue living with you.

For starters, have a night stand next to your Dad with water, snacks, whatever he usually asks for during the night.

Let him know that you need to sleep during the night so you can keep working during the day and you will hzve everything he needs on his nightstand and or in his bed in a deep tray that he czb reach and as far as gettinf up to pee at night, he has two choices, he can start wearing Pull Ups/Adult Diapers, that will aliminate nighttime bathroom visits or get a Cathiter.
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All of the below answers provided very good advice, esp. about Medicare providing some home health care. I wish I knew that before. Also, from people in the caregiver support group I attended for 3 years, I learned that some life insurance policies will let you tap into that for living care. Something like enough $$ from it set aside for funeral expenses, and rest to use for living care. I don't know the pros and cons of this, but ask your Dad's insurance agent if he has a policy and if something like this would work.
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To work at home and to be a caregiver is super hard! Particularly because your Dad will not be getting better, only worse over time. To resolve waking you up to go to the bathroom at night, can you transition him to disposable diapers? Can you ascertain if he is suffering from depression and maybe some medication might help. I assume Dad is helping you with living expenses, but maybe it is not enough and that is why you working at home. I am afraid that this situation might become more overwhelming if your Dad’s health should decline further. I think you need to decide if you can really continue as you are, or do you need some type of assistance. Bringing another person in to help may sound good, but it can bring its own problems as well; like finding someone you can trust. There are no easy answers. You will need to sort out what is best for you and your father, Because he is immobile his situation will make your options and choices much more limited. His complaints will not stop, so do not argue, just try to deflect them.
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Call your county office on aging and see what programs are available for home care or companion care.
I assume your dad doesn't have the resources to pay for assisted living?
If that's the case, I'd start the process of getting him qualified for Medicaid. As parkinson's advances, he will need skilled care. If he could be spent down, he may qualify now for a SNF placement.
If there's not too long a wait list in your state, he may qualify for a Medicaid Waiver program - they pay for home care (and in some states AL).

In this economy, you really can't risk your job over your dad's demands.
Draw hard lines. He must wear Depends at night. He cannot disturb you when you're working...lay down the law and stick with it. I've found that even the most considerate elderly people will assume you WANT to do all that they ask, even when it is way beyond reasonable. You have to set the boundaries and be the voice of reason.
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Mepowers Aug 2020
Excellent advice.
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My advice from my present self to my past self, see a therapist in midst of family crisis. Don't wait. Don't put it off.
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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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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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Contact your Alzheimer's Society . They usually have a list of folks that will come and sit with him for a while and have free courses on how to deal with this behavior.
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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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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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Imho, you may have to get respite through any means possible, else you may fall faint and ill and be good to no one. Prayers sent.
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It’s very hard to not take it personally, but try not to.
I did this for seven years and it was labeled dementia, but know it was Parkinson. His Mother had it.

It’s so hard to watch but try to change the subject as much as possible.
I kept telling my Dad ... You are ok! You are safe!
Do you want something to drink?
Try to not take it personal. They are very in and out.
I played songs from his time and distracted him. I played it constantly on the tv on you tube to distract.
He came alive with the music.
it’s very painful to watch a strong figure weaken.
I would always take a moment to tell him how much I loved him and to always go to the light. It’s ok , I want to be free and happy and not live this way! It’s ok!

He didn’t scare me when He finally let go.

I hope this helps? Sending lots of love and light.
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I feel your pain. I cared for my mom with Parkinson’s disease. It’s tough, very tough.

Their pain and mobility issues are a constant challenge for them. As Parkinson’s disease progresses it is more difficult to manage. My mom had a tremendous amount of anxiety and it becomes extremely difficult for them and anyone who is caring for them.

The Parkinson’s meds only help so much. Mom went to a wonderful neurologist who gave her thorough examinations. Occasionally her meds did need adjusting.

Now she is being cared for by hospice. Medical research is so important and advancements in medicine are made all the time. I sincerely hope that one day there will be a cure for it.

Best wishes to you and your mom.

I did utilize receiving care from our local Council on Aging. There is usually a wait list. They will come to your home to do an assessment. After your mom qualifies for the program they will sent someone out to help with sitting, bathing and preparing light meals.

Take advantage of it if you can. I appreciated their help so much because like you I did everything for mom before a social worker told me to contact them for some help with mom. The social worker also told me about this sight which helped me tremendously. There are many caring people on this forum and it helps to be able to vent, receive advice from others who have been in similar circumstances.
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