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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.

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YOU ARE NOT FAILING YOUR DAD...
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.
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ask his doctor to request an evaluation for Palliative or Hospice Care. At least you get some help. or ask a social worker.

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.
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I am there with you. I was released from my job in April have been on unemployment and have been caring for my mom since she moved in with us in June. She is 80 w/ NASH and other co morbidities. I have an aid 8 hr a day for her on days to help out so that I can get other things done and not have to baby sit her all day. I have a side business which now i am trying to make my sole source of income, but that has still been difficult unless I lock myself upstairs in an office. There are days like today when mom seems to have something brewing (hopefully not another uti) that I see her health diminishing and it makes me so depressed. We have a lot going on including trying to sell her house and start an addition for her so she can have her own mil suite rather than camping out in my dining room. Some days my hubby is great and others he just adds to the stress. I have been getting to the chiropractor at least every other week and trying to focus on self care. I have to learn to separate myself and let the aid be with mom more now that we have the same 2 aids in. The first month with this new company was a revolving door of aids until they found these 2 wonderful girls.
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Also: my friend is a caregiver for Public Partnerships LLC, and they provide around the clock care for the client she cares for in home. It's for people with disabilities, but there are other programs under the umbrella of Medicaid that should be able to pay for caregivers; even if it's up to 40 hrs per week, maybe that could be combined with any caregiver benefits from his health insurance too...?
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.
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My suggestions: check with his health insurance to see how many hours per week they may cover for a caregiver; some insurances cover up to 35 hrs per week.
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.
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it is draining ordeal mentaly and emotionaly and physicaly there will be peace only when its over im going thru simlar with my mother i always envisioned her just going to sleep and not waking up in a quiet overnight dream and then reality came, bed sores, uti infections, and dimentia just to name a few its a complete nightmare but dont ever feel guiltyyour doing your duty and when hes gone thats it its a thankless job you werent prepared for but there will be nothing to regret there is no real answers or magic wand to fix hes lucky to have you so hang in there it could always be worse
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I'm assuming that since your dad is 82, you must be in your 50's or 60's. Not only depressed, but you're overwhelmed & expecting too much of yourself. It would probably take 3-4 people to care for your dad, not just one. You need to keep yourself as healthy as possible for your retirement. Don't use your money to help dad. You will need that for your retirement. Qualify him for Medicaid & have him placed if he has no other resources (family, friends, VA,). Facilities are more knowledgeable & better able to take care of their residents than they were in March/April. Get yourself some counseling & possibly meds to help with your depression. You certainly deserve it. Find a support group to help you also. Good luck.
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I know what you are going through. I have a mom with end stage Parkinson's and been caregiving for years here at home. We are under hospice care in my home, it is now t for the faint of heart and dies a toll on your body and soul. Please look into Seroquel to help get him to sleep at night and give you a good night's sleep. Talk to his doctor ASAP and also see if he qualifies cried hospice, at least you can get their advice and help you make better decisions on placing him in a facility big you can afford it. But, keep an eye on facility's staff as most places don't know how to work with Parkinson's medications. Praying for you!
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Imho, dear man, you must seek respite by any means possible, e.g. Visiting Angels (yes, I did see that you have some help), a church group, et al, else you fall faint and ill and good to no one. Prayers sent.
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Dale, you have received a lot of good advice here. But I would like to add a couple of things. If you are this depressed now, you need to address it right away. After 13 years of caregiving for my husband, I began having panic and anxiety attacks to the point that I couldn’t function for 2 weeks. I thought I was having a heart attack; I almost passed out, my BP shot up to 195/95. I was at urgent care, my MD, then cardiologist all in 3 days. I had already been seeing a therapist and I was taking an antidepressant. My MD put me on Xanax and sent me to a psychiatrist. I ended up going on disability, because I could no longer work, and that doesn’t even cover the physical issues I was having from lifting and pulling on a 6’6 275 lb man. I had to finally place him in a nursing home for his safety and mine.

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.
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I'm sorry you're going through this. I can understand, my father had Parkinson's as will. I'm sorry, it is only going to get worse. You may not want to hear this, but I wouldn't advise draining your income/savings on his care. His funds should pay for his care. You will need your money for later in life. He belongs in a nursing home where he will get supervised 24 hour care. My father's NH took extremely good care of him, it was the absolutely the best situation for him. You will feel so much better knowing that his needs will be met much better than you can do at home.
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Dale, is your father a veteran?
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If he has no money to pay for hiring help, consider Medicaid, Hospice and VA benefits. Medicaid can provide a limited number of hours for home care if he doesn't qualify for a NH yet. VA benefits can also provide a limited amount for in home care. I don't believe you can get both, but apply for both if he qualifies and take whichever offers the most! Generally Medicare doesn't cover any LTC. Others have mentioned coverage for respite care (one week/year?) Also, if you hire from an agency, see if they can send a nurse for an assessment. Before we hired, they did this and Medicare DID pay for the testing/assessment. The nurse told me that if mom had agreed to some personal care, such as bathing, Medicare would have covered some of their services. Mom declined, so we paid for them through her funds, until she refused to let them in. Plan B = MC.

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
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Although this may be of little actual help to your situation, know that you are not alone in this. Many of us suffer the same fate. COVID has destroyed any semblance of dealing with aging parents as we might normally do by making it very difficult to have a loved one in a facility. There is no way to check on them in the facility and "window visits", though helpful, don't really allow us to assess the patient. It's a sad state of affairs and I wonder if extending life through medicine is really that much more desirable than in times past, when the elderly would be allowed to pass. Hugs to you, my friend. It is a difficult, painful, and draining row to hoe.
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Ask a caregiver, Dear caregiver, you are very courageous in all you do as a caregiver. Yet, no matter how much you love your dad, you cannot give more than you can give. You are exhausted leading to depression signs that you are most likely be suffering from compassion fatigue. Most caregivers in your situation are grieving, called anticipatory grief, as each day you are loosing more of your father. Yet what you are doing is killing you. So, you have to admit you can no longer do this your self. You are not superwoman. It is apparent to me that you can no longer care for him alone. If here were alert, I am sure that he would want the best for you.
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
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You should consider placement. If he has any money, then use it to pay for facility. If not, then start the application for Medicaid and at least get him on a facility waiting list. There are thousands and thousands of people in facilities that don't have Covid. Your health is important too.
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If your Dad doesn't have enough Social Security money coming in to hire help or you don't have family members that can help then you might think about hiring a Live In if you have an extra Bedroom. I found one for $500 a week.

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
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dogparkmomma Nov 2020
I believe that there are a certain number of hours that the live in has to be allowed to sleep. so if he is up all night, that might not be allowed. We had live-in help at independent living for a short time while getting inlaws into memory care facility and they could get up a couple of times during the night for bathroom issues but I was warned that more than that would require 12 hours shifts.
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It sounds like you want to keep dad at home, at least for now. But your health is most important. Seek advice from your GP.

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,
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My parents moved in with my husband and I five plus years ago as dad had the beginning signs of dementia. We cared for him in our home until he passed, at age 87, June of 2017.
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.
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Please see your primary care doctor. You have physical issues that must be addressed. In addition, please consider seeing a psychiatrist. Depression is the common cold of mental health. Take time to get some weekly therapy time (there are online counsellors) to discuss new ways to manage stress and coping with caring for your dad.

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.
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Is there a reason he can't go to a skilled nursing facility? COVID is a risk when caregivers are coming in to the home as much, maybe more, than it would be in a well run nursing home. A good nursing home is now very much aware of COVID and screens their caregivers and also requires that they take precautions in their care of others.

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.
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I posted earlier and was thinking about you and checking in on you. Depression is heartbreaking and can be debilitating. It is not uncommon for caregivers to experience it.

Let us know how you are doing. Take care.
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You've got yourself a very hard situation. If you're determined to keep your father at home, you're going to need to make some changes. First, ask his doctor to prescribe sleeping medication that you give him so he won't be up all night and you won't have to employ sitters anymore. If you cannot get him up out of bed anymore, you will need to get a Hoyer lift and be instructed on how to safely use it. Then, you will have to rethink your caregivers. Sitters are not the level of care he needs. You will need to hire skilled and experienced CNA's to do his care, especially the AM care (getting toileted, washed, dressed, fed) and the PM care (toileting, washed, undressed, put into bed for the night). As for him not being able to clean himself anymore, that will get worse. With Parkinson's he will become totally incontinent and diaper-dependent at some point. If hygiene care is something you struggle with, then you would do well to look into nursing home placement.
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You really sound like you are close to the breaking point. Nursing homes are not as dangerous as they were in March with regard to CoVid. It is the lack of visiting and resultant loneliness that is the bigger health issue now.

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.
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I empathize with you. My mom has Parkinson’s disease. She lived in my home for 15 years.

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.
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Dale
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.
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The worry about COVID is secondary to the worry about your own health. I'm afraid this pandemic will be with us for some time yet. The stress of caregiving, the financial strain of caregiving and the endlessness of caregiving already is causing you to “resent being there”. I find myself repeating this mantra over and over again to caregivers... Know your caregiving limits!! Don't let your caring be at the expense of your health. Continuing to care for dad in your present frame of mind can result in a downward spiral for you both that could cause you to become desensitized to your dad's needs. He requires more care that you can offer at this point. Seek out a care facility to improve both your own life and your dads.
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Dale, unless you are independently wealthy I am terribly worried about you putting your own money into the care of your Dad to this extent. The cost must be enormous. There is no one who wants to put anyone into care right now. It is an ENORMOUS risk. But Dale, the truth is that the caregivers coming into your home now are going also to other home. They could be carrying this virus with them everywhere all unbeknowst to themselves. Quite honestly, with the caregivers coming and going his risk is not a whole lot different than being in care. I think you now recognize that you cannot continue long with this; covid is going to BE here a long time, even IF we get a vaccine. You are going to have to make choices, and there is no GOOD choice here. It just doesn't exist. Just today a poster posted that we MUST be cognizant of the stress 24/7 caregivers are under, was medivacted out for a major surgery to which stress may have been contributory. The things is, if you go down where will Dad be then?
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.
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