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.
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.
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.
- 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.
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
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!
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.
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.
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.
Your dad might see things different if you were not there to complain to
Lisa
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.
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!