Hello, I'd seen this forum in the past and it seems like there are some very nice and helpful people here, so I thought I'd ask if anyone had some tips or guidance for me. I'd appreciate any little bit of info to help, I'm kind of alone in this and am not sure what to do.
My father was diagnosed with Parkinson's about 3-4 years ago and got on disability. The first two years were pretty normal, just some minor tremors and stiff muscles, and the third year wasn't too bad, but I had to start doing more and more for him.
This last year has been very rough on me and him. I have been a full time caregiver for him for about a year now. I always have to be alert for when he needs help, am constantly woken up in the night for help, can barely leave the house since he needs help so often, and it's getting very hard to help him maneuver as he loses more and more of his ability to assist me in moving. (he's quite heavy. Was 250~ lbs, but I've managed to get him to 225 over time.)
I had recently been thinking about looking into housing or care for later on, but the last month has been so bad I need to figure something out quick. He has gotten much worse both physically and mentally that it kind of surprised me how quick it's happened.
His memory and speaking are getting worse, and he's had a few falls that weren't bad thankfully, but any of them easily could have been. I have a series of sheets and pads on his bed that catch about 4 accidents a day that I'm washing daily. I have to wash him, clothe him, feed him... almost everything. The constant, unending stress and very little sleep are starting to have serious effects on my mental and physical health, and I also am not able to give him the care he needs anymore. The house is not disabled friendly and it's very hard to help him on my own.
I will be calling some area agency on aging place I had heard about after this, so maybe they can help as well, but I'd appreciate any kind of advice if you have any.
Oh, and is there any way I could have been getting paid for this? I tried looking but it seemed like we didn't qualify for it... I have no money and am going to be in an awkward spot after I'm not taking care of him anymore since his disability was only just enough to pay for food and rent/utilities.
He's on disability, has Medicare, and we live in Michigan if any of that information helps.
I myself wouldn't know where to start, and I do know all this would be easier with a hospital admission for some reason. This would enable you to call in THEIR social workers to help with discharge planning and placement care. I would contact APS in your area and tell them you cannot physically do this anymore, and where should you turn before taking Dad to an ER for admission because you cannot budge him.
Does your Dad understand at all that you can no longer care for him at home? Whether you can be paid or not it would not be a living salary and you are still left with a 250# man.
I am hoping you find some help here or a place to at least start. Will send Stacy a note re your post. Wish you good luck.
He is okay mentally most days, but has bad days, which are becoming more frequent, where's he's easily confused.
He has trouble with words, but there is still normally coherent ideas behind them, I just have to work with him to find out what he's saying. He is also very bad with time and short term memory, but he does realize it's getting very hard for me, and has even said in some of his more recent bad moments to look for a place for him.
I'm trying to find his paperwork for social security/case worker, but he did all of that on his own before he got bad, and now isn't sure where it is.
What is calling APS like? I'm not sure if my care counts as neglect yet since only about 2 days of the week are where he's so bad it's almost impossible to work with him. The other days are hard and stressful sure, but I can still manage to get him taken care of.
Maybe that does count as neglect... I don't know anymore.
He also has appointments with his primary care and neurologist in the next few weeks, so right now I'm just kind of waiting around to find things out.
Next fall, call 911 to have him taken to the ER. Then tell them you will not take him home as he needs more care than you can safely provide.
You may be eligible to remain in the home since you cared for him so long. Another reason to speak with an elder law attorney.
Parkinson’s disease affects everyone differently.
I hope that you are able to receive the help that you need for your dad. Wishing you peace as you continue on in your caregiving journey.
I was in the same position as you are in with my father. PD is a brutal disease, and it gets progressively worse. The quickest way to get help, and is what I did, is to call 911 and have him transported to the ER. Once he's in the hospital, you seek assistance from the SW to find placement for him and apply him for LTC Medicaid. You need to tell them he's no longer safe at home, and you are unable to take care of him. With me, it was easy because I had to work, and the SW know he wouldn't be safe alone anymore. You are going to have to stress to them that you are unable to safely care for him.
As far as getting paid if he stays home and you take care of him, It is doubtful, but I think there may be some movement towards that in the future. States are looking for more ways to keep seniors home and giving families support to do that. You'd have to ask your state's Medicaid office. But caring for someone with PD is eventually going to require 2 people for assisting with movements.
I will look into the MiChoice programs, elderly law attorney, and also call the area agency on aging in the morning since I wasn't able to today.
Just saw mstrbill's post about LTC Medicaid so I will look into that as well!
Thank you!
I have my mom in Hospice they will provide the hospital bed that goes up and down with rails so he won't roll off the bed.. all the toiletries, pampers, pull ups, bedsheets medicines, wheelchair just about everything and I also have my mom on care attendant. She has 52 hours to use. So Monday through Friday someone cares for her 9am-5pm and Saturday and Sunday 4 hours each. My mom lives with me.
Now I will be honest. Sometimes the care providing service does not find attendants right away and sometimes those that do show up are merely baby sitters, I had to let them go but I've been very fortunate to have an excellent few so far I could rely on, opens up the day for me and the wife to step out and enjoy some time.
I am very concerned for YOUR health. How old are you? You can permanently injure yourself. Stress can really affect both physical and mental health.
In your profile, you say you are the youngest of 4 children. How did you end up in the postion of fulltime caregiver? I take it you are unable to work. And you state that you have no money. Why do your 3 siblings get to continue on with their lives as usual, but not you? Or did they perhaps say he needs to be in a facility, and you said no, so you are stuck taking care of him because you were the only one who wouldn't accept his going to a facility? Of course the truth could be very different, but I'm always curious to know how/why just one person is stuck with all of the caregiving.
Are you your father's HCPOA or POA?
sudden, quick decline is always suspicious. check for UTI; additional factors.
parkinson's tends to progress evenly, slowly, worse and worse.
You are a saint to have held up this long. Please contact his PCP, make sure that they are aware of the observed changes and, ask them for referrals to a Case Manager who is usually a licensed SW or RN to assist you with placement care options; they will assess the financial assets available that he has and, provide potential matching care facilities for your consideration. He will need a " level of care" needs assessment either from a physician or otherwise licensed professional.
These are big big hurdles you are about to embark on; GET HELP . Start with PCP.
Another option is for you to call a local hospice of your choice, ask to speak with the Clinical Supervisor and, share your father's status; hospice may be able to provide some valuable information for you to consider at this point. You can of course share with the PCP that you would like to have your father assessed by hospice for hospice appropriateness for potential admit to hospice care ( at home or in hospice facility). The PCP should honor your request. Or you can contact a hospice as I have shared and, the hospice can sometimes be helpful communicating with PCP.
Hearing the word " hospice" may be overwhelming; please take a deep breath and, know that hospice is about " living with a life limiting illness", not about dying. It may offer assistance that could help both your father and YOU .
Practice self care ! You are in for the long haul....and will need it and, support from many disciplines. Be sure that you and your father are also receiving faith based support of your choice or other spuri, emotional support.
Peace.
His doctors are though. They can help make the arrangements to get him placed if you can't care for him anymore.
Your town's hospital can help you to if you need to bring him to the ER if things get to be too much for you. Ask them for a 'Social Admit' because you cannot care for him anymore. They will admit him to the hospital and keep him there until they find a care facility appropriate for his needs.
You cannot get paid as his caregiver. If you file for Medicaid at home, he will only get caregivers for a few hours a week. Do realize that if he goes on Medicaid into a facility, his income goes to the nursing home except for a small amount for personal care. That means you will need to hit the ground running with a new job because you no longer share his income.
Ideally, you should have done this a year ago and really planned.
By the time he was properly medicated and such---he did a lot better. He never 'tremored' until the very end, he was, however, bedbound, essentially, for the last couple of years.
We moved mom and dad into an apartment built onto YB's home. It was not ideal, but it gave mom a lot of help and breaks from the constancy of CG.
Had he been 'alone' he would have had to go into a facility. I'm so glad he never did. He was always sweet, patient and grateful for anything and everything done for him. This was a dignified, lovely gentleman and those traits continued.
He was also a big man--and so mom needed help at the end for turning and lifting, but we worked it out.
ONE CG for a Parkinson's patient as bad as your dad is will most assuredly burn you out in record time. Probably time to have him fully assessed and possibly placed.
Know this: His needs will become greater and greater over time. Your care time will be exponetially increased also.
Daddy lived to 76. The last 2 years were truly awful, the last 6 months? I never want to have to see that in my life.
You've been amazing. Give yourself credit for that. I know how hard this dynamic is.
Depending on the hospital and staff, they might try to convince you to take him home once he is better and/or evaluated. REFUSE to take him home. Keep repeating that you cannot take care of him safely, and he is not safe there. That will make them find other options or facilities.
You might be fortunate that you have great responses from hospital staff and they do not try to send him with you. But just in case - keep all this in mind.
A friend of mine had a daughter who had a severe brain trauma. Once she was better, they tried to send her home with her mom. She was not able to provide care and kept politely and firmly repeating that she could not. She had to be firm and repetitive. Eventually they found a great facility for her.
A Place for Mom is only dealing with private options. But the home we found -- Massachusetts was able to cover much of the bill, and (eventually) we were able to get VA Aid and Attendance (which is an incredible program.) I did have to foot much of the bill for ~a year while all that got settled.
But having an agent who can quickly search through care options in the area was a godsend for me, particularly given the difficulty of thinking well in caregiving burnout.
Since he has no mobility we purchased a Sara Stedy (used) which has been an absolute life saver. Otherwise, we would not be able to get him out of bed , get him to the bathroom or transition him from his chair to a wheelchair.
Wishing you good luck.
Then, check with local agencies on aging for assistance in finding place that will be able to meet his needs. It may take time for him to be accepted since most places have a waiting list.
Meanwhile, seek financial options for yourself. Apply for government assistance - federal, state, and local. If you need help with this, local churches and places of worship usually have staff that can point you to the right resources.
It’s clear that the level of care that your father needs is way beyond what you can give him and he needs to be in a nursing home or have aides come in his home to provide care. My suggestion is for you to apply for Medicaid where your father could be placed in a nursing home or have home health aides come to his home to care for him.
Hope you find a solution to this problem very soon before you fall into the category of burnout.
Also if your father served in the military he may qualify for Veterans Aid and Attendance. Which is to pay for help with the activities of daily living. You can find the forms on the web. It will also help to pay for assisted living.