I have posted on here previously and things are getting worse. I still don’t know what to do. I care for my 82 year old father who has Parkinson’s. His sleeping is worse; he’s up all night and sleeps during the day. I’ve hired a sitter but I could only afford 4 hours a day 5 days a week with two of those being at night. The cost is killing me, my dad can no longer get himself up so my back and shoulders and knees hurt, he can no longer clean himself after using the bathroom or pull his clothes up. I’m depressed and don’t know what to do. Because of Covid-19 I’m afraid to put him in the nursing home. Plus I feel like I’m failing him just thinking about it. And now I’m resenting being here. I love him so much but I feel I’m losing a battle.
28 Answers
Helpful Newest
First Oldest
First
Sadly, this is a part of life. MY FIL said when he got cancer: These bodies are not made to last forever. He was a gentleman. and he and MIL would read the bible to our child all the time. He did everything he could to stay as long as possible for his one and only grandkid. :)
These bodies take a lot. and caring for you LO takes so much love, energy, and physical and mental strength. My friend ended up in hospital taking care of their dad.
Breathe.
Talk to doctor first. ask for palliative/hospice evaluation. Go from there.
I am actually thinking about taking a nursing course just so I can get a better understanding on how to transfer a person the correct way.
Hoyer Lift. I don't know how to use one, but they use it for my aunt. I would like to learn.
ADVERTISEMENT
If he doesn't have money then he should be able to get Medicaid etc.
Like I said, the Office on Aging may be able to refer you to the right people to help.
*Personally, I am keeping my dad at home with in-home care.
If he is a veteran, may be able to get veteran benefits to help pay for a caregiver.
Or, apply for Medicaid (when assets are low enough/when he qualifies in your state) so you can get paid while working for your dad. There are a lot of programs under Medicaid that will pay you, depending on the program he would qualify for. Medicaid has programs that would pay for caregivers (including yourself) for in-home care. It's to your advantage that he doesn't have much money so he can qualify for Medicaid to provide the funds for in-home care. I think Medicaid covers 40 hr per week; you could use that for hiring a night shift aide so you can sleep. I read online that you can't get Medicaid while getting veteran benefits; you can check that out. So much info about Medicaid and VA benefits online I learned about, that the elder lawyer confirmed. I got a consult with an elder lawyer; was helpful.
Look up your county's community resource guide online and see all the benefits offered to your dad for a low cost or for free. Also, this will include your local office on aging contact number; call them and they will refer you to the right places to find help.
*For transferring your dad, can try using a transfer board or/& a Beasy board. I used a transfer board for a client who had no leg strength, and it worked good.
Also look online for proper transferring techniques etc.
I have an agency aide (lowest price I found in south jersey) who is great; he helps me a lot with my dad who has Parkinson's.
Also, if you decide to place him in a facility with VA or Medicare/Medicaid help, there are people that work local to you and do placement at no cost to you, the facility will pay them a contracted fee. They no all of the local facilities and which ones are good and those that they would not recommend. If you have to go the Medicaid route, typically there is a five-year look back on your father’s financial expenditures. I was very fortunate because I went to an elder law attorney that helped me pro Bono after meeting my husband and seeing what I’d been dealing with. If you can’t afford that, many times you can do the paperwork yourself or get help from the nursing home, and many times the nursing home will take your loved one in pending Medicaid.
if you’re determined not to place him, then you have got to get help before your health (physical and mental) causes you some really serious health issues. I’m praying for you both.
Thankfully she had sufficient funds to cover the cost, so she's in a very nice MC place. She also just qualified for hospice (they denied a month ago!!!), and this will provide a hospital bed, wheelchair and eliminate me needing to buy and deliver supplies such as briefs, wipes, etc!!! YAY! They also will be there several times/week, to assist staff with mom's care.
You shouldn't be depleting your own income/savings, as you may need them in the future. You also aren't doing him any favors if this impacts your health and you can't care for him anymore. Sleep deprivation IS a known killer!!
See this page for some ideas on who to contact:
https://www.medicareinteractive.org/get-answers/medicare-covered-services/limited-medicare-coverage-long-term-care-services/medicare-and-long-term-care-basics
Your feelings of resentment are normal reactions to abnormal situations.
it seems to me he does need to be placed in a nursing home. Talk to his doctor about what nursing homes he would recommend. Your father is not going to know the difference.
So you may not be able to visit. This is difficult for you. But the issue is not his. You are not letting him down. You are not letting yourself down, just recognizing that this is just another step of your grief and the awareness that you are letting him go.
Start easy, talk to spouse, family, friends, pastor. They will support you during your grieving process.
Dr. Ed Smink Author of “The Soul Of of Caregiving a Caregiver’s Guide to Healing and Transformation.”
www.https:soulofcaregiving.com
If you don't have the funds or help than your only option would be to put him into a Nursing Home because in the end, you have to take care of yourself.
Be upfront with your Dad that you don't have the money for help and it's now effecting your health.
Then go check out some homes and narrow it down to two and let him go look and decide.
Sad situation. Mo one wants to go to a Senior Place to live as they would like to stay in their own home where things are familiar and where they feel lived and safe.
Maybe you could try hiring help fir the weekend to give you a break.
Have you checked to see about a day care place that woukd be free and have things for him to do? I hear they even pick you up. Check with all the Senior Resources.
Prayers
Is your dad a veteran? If so contact the VA. He can probably get assistance from them. Medicare may also provide assistance . CNA's that work for agencies are tested regularly .
I suggest contacting department on Aging and perhaps a place for Mom could help you. Does your dad qualify for at home hospice care?
Is there anyone in your family that can help temporarily, to give you assistance until you get more help?
Best wishes . I don't know first hand about Parkinson's,
About six months prior to dad's passing I made an appointment with my PCP and asked her to put me on an antidepressant. The result was nothing shy of a miracle. About a year later when the tears and frustration peaked again, she upped my dosage.
Medication is not for everyone but it worked for me. I have a great support system including my husband, but I still feel I'm 'on' 24/7.
Whatever your self care will be, when you start feeling better, things will seem a little brighter.
If your dad is a veteran, look into Aid and Assistance benefits. They were a godsend for in home care for my dad and continue to provide some benefits to my 91 year old mother.
See about a psychiatrist for your dad as well. My dad's was wonderful. She was able to prescribe a sleep aid that was helpful as dad would often wake up in the night, lay out a few articles of clothing and wait for the next train.
Sorry if my ideas, suggestions, comments seem jumbled. There is just so much I would like to share but hopefully there are a few ideas to consider.
You are doing the hardest thing right now. I know, because I'm doing the same thing.
Best of luck.
I know that COVID is a concern for everybody right now. Residential facilities have gotten better about handling COVID and CDC protocols. Please consider getting your dad into one since you are having pain issues as well as not getting enough sleep.
Seems like he needs the kind of care a nursing home can best provide. You can't continue to take on the care he needs by yourself. And obviously the care you are paying for isn't enough despite the financial burden on you. He just needs more than you are possibly able to provide. No wonder you are depressed! You are attempting the impossible.
Please check into any assistance he may be eligible for from Medicare, VA etc. (Other posters here may suggest specifics) Even researching this may "get you off the dime" and provide at least some relief from your sense of hopelessness and helplessness. Don't feel guilty and don't let him make you feel guilty (if he is inclined to do so). It would be best for him and for you. Who knows, he may experience a sense of relief, too, discovering that he can get his care needs met without depending on you. (I've seen this happen). Full time care for him is the only reasonable solution, in my opinion.
Let us know how you are doing. Take care.
Start looking into home care and/or placement for your Dad. Call the local Department for the Aged in your county and just start getting an idea of what your options might be and how you might pay for it. If your dad is a Veteran, he may be eligible for some aid there.
There comes a point where the physical care is just too much for one person. You sound like you are there.
As you and I know, Parkinson’s disease is progressive and there is no cure. It doesn’t ever get easier caring for a parent with Parkinson’s disease. It only gets worse.
I got to a point where I became exhausted. I am no longer my mother’s caregiver. I felt instant relief when she moved in with my brother and is now receiving hospice care.
Have you contacted Council on Aging to help? Or hospice? Paying for care is very expensive. I don’t see how you can keep paying for caregivers. It has begun to effect you financially.
Can you do some research to see if there are any facilities that are protecting their residents as much as possible from Covid? I do understand your concerns.
I hope you find relief soon.
Could you call hospice to see if your dad qualifies? Under new Medicare guidelines, I believe he would. You would get some help and a regular period of respite. Up to five days each renewal period. This respite Might give you a chance to sort things out and find the right place for your dad. I have a cousin who cares for her mom with Parkinson’s and now also her dad who has dementia. I truly do not know how she does it but I can tell you she is not trying to work. She loves hospice. They have helped her so much. If you don’t already have them call them now. It’s a start and what Alva said about the helpers coming in already bringing a risk is so true. My cousin, her parents and two other family members have all had the Covid (courtesy of a helpful neighbor). Her dad was in the hospital twice. The all made it through. Her mom (who has been on hospice for three years) had the lightest case. You can’t predict what Covid will do, but we do know that what you are doing is unsustainable. Let us hear back from you. We care.
I am so dreadfully sorry. There are so many now undergoing this dreadful stress. I know you aren't asking for answers and know there may not be any. I am just asking you if you will begin to explore your own human limitations, just in the hope for your self preservation.