Parent w/ Parkinsons, next steps...

[Anonymous]

I've gotten good advice and kind words here, over the years I've posted occasionally regarding my Dad who has Parkinsons disease.

So here we are, at a crossroads-Dad is 80 and in late stage of the disease. He lives at home, cared for primarily by my mom. I've posted about them before, in 2022 he fell on her while she was caring for him and she sustained a broken hip (and they lay on the floor all night). There has been MUCH resistance to the reality of the situation. I live nearby and see them daily, I do stuff around the house and help with some drs appts, but I also work full time, commute 2 hrs a day and am a single parent of a dc with sn. So I'm not able to full time caregive.

Anyhow , they've mostly gotten along with help from me, my sibling when he can travel here and even my local adult kids. I also arranged for weekly bathing assistance from an aide and once a week a nurse because of some pressure sores he has. His decline has always been in spurts, but in the last few weeks-it's been noticable. He's sleeping a LOT. And he is very weak. A fall today, and pretty much weekly lately. My mom has a huge painful bone spur in her shoulder, imparing her ability to use her left arm. It was supposed to be replaced Friday-and I arranged FMLA for me and respite for him-but a pre op cat scan showed a nodule in her lung. Most likely scar tissue, but having a pet scan tomorrow to find out. Surgery was cancelled though until she is cleared (and it was nearly 2 months out the first time we scheduled it). I'm taking her to the scan and one of my adult dc is staying in the house with dad, because he can't be left alone , can't care for himself and falls.

All this to say-we just can't keep him safe in this weakened condition. Mom wants to put him in a rehab facility temporarily so he could do PT and gain some strength. I agree with her, but I wonder how ...realistic...this is at this late stage. I mean...is hospice something we should be considering? My main goal is that he, and she, be safe. We desire as a family for that to be at home if possible, although at the moment, that is not the case. I was going to take him to the VA hospital tonight after he fell while I was at work (my adult dc were nearby and went and picked himup) but mom doesn't want to miss the pet scan appt (understandably) so dd and I got him into bed tonight (he's so weak, mom could not) and after the appt tomorrow, I need to do 'something' but not sure what. I'd appreciate insight from others who have been down this road.

[Anonymous]

My dad has Parkinson’s.

What are the financial resources available?

Why did you bring up the VA? Does he have some sort of benefits?

I would first try to bring in at home caregivers if you can afford it.

He may not get very good care at rehab. Plus he will likely get COVID. I have four relatives who got COVID in rehab and none of them were able to get paxlovid in time. The rehab doctors weren’t able to prescribe it. They could give him sedating medicine that could make it hard for him to swallow. It could lead to the end.

Could you take FMLA?

[Anonymous]

Anonymous wrote:My dad has Parkinson’s.

What are the financial resources available?

Why did you bring up the VA? Does he have some sort of benefits?

I would first try to bring in at home caregivers if you can afford it.

He may not get very good care at rehab. Plus he will likely get COVID. I have four relatives who got COVID in rehab and none of them were able to get paxlovid in time. The rehab doctors weren’t able to prescribe it. They could give him sedating medicine that could make it hard for him to swallow. It could lead to the end.

Could you take FMLA?

Two agencies: home instead and senior helpers. I don’t know how good they are in your area as they differ from place to place.

[Anonymous]

Anonymous wrote:My dad has Parkinson’s.

What are the financial resources available?

Why did you bring up the VA? Does he have some sort of benefits?

I would first try to bring in at home caregivers if you can afford it.

He may not get very good care at rehab. Plus he will likely get COVID. I have four relatives who got COVID in rehab and none of them were able to get paxlovid in time. The rehab doctors weren’t able to prescribe it. They could give him sedating medicine that could make it hard for him to swallow. It could lead to the end.

Could you take FMLA?

He has a disability rating with the VA. He's only been enrolled in VA for 2 years (they refused to apply for many years, I did when they were both hospitalized after the hip break incident) but they are much better than the private drs he sees. He has a social worker and they are the ones who do the bathing help. I feel like he'd get better care at the va hosp an hour away than at our local hospital.

I can take FMLA (work for a fed agency). I actually have a case on him because he's incapable of self care, I'm using it tomorrow in fact because of my mom's appt and not being able to leave him alone. My concern is, I can't take it open-endedly, meaning I need a plan for him.

I hear you about the covid. He's vaxxed, he did get it in 2021 but it had little effect on him (thankfully!).

[Anonymous]

And f you can afford in -home care, then do that.
I recommend Care with Love, or Right at Home, or Capital City Nurses.

But the next time he falls, call 9-1-1 and get him to the ER. From there, when it’s time to discharge him, you can tell them it’s an unsafe discharge to go home and he needs skilled nursing to strengthen his balance.
This will prompt the hospital discharge planner to get him into a skilled nursing facility for temporary stay and PT/OT assistance that insurance will pay for, as long as he is admitted from the hospital and not from home.

I’m sorry this is happening to your dad and your family, OP.
Elder care is so expensive and sometimes you just need a little respite care to bridge the gaps until you figure out what to do……

[Anonymous]

OP there is something before hospice called “advanced illness care” or “palliative care.”

Idk how the VA handles it but it’s something you can ask them about.

https://www.capitalcaring.org/get-help/our-services/advanced-illness-care/

[Anonymous]

I feel so bad for your mom.

[Anonymous]

Anonymous wrote:I feel so bad for your mom.

OP here-so do I. She has so much on her plate. I know this has been so incredibly hard for her to accept the gravity of-they've been married since they were 19 & 21!!! She's taken such good care of him for a long time now. Without her he'd probably already been deceased.

Thank you other PPs as well. I will ask about pallative care. I may take him to the VA er later today-I think that might be for the best. I will get Mom through her pet scan this morning first. It's going to be quite a day.

[Anonymous]

I’m so sorry, we went through the same thing w my parents and it was just so sad and hard. Agree w your thought to take him to the VA hospital tonight. They may admit him and from there you can determine w the social worker that he cannot be cared for at home and they’ll figure out a placement for him. Your other option is hiring full time care at home now and seeing what happens.

W my dad we did full time care at home, bc both parents really wanted him to be home as long as possible. Then he had a fall, he was taken by ambulance to the hospital admitted and ended up in palliative care in a nursing facility. He was in much worse shape than we actually realized and passed about a month after being in care. I think if your dad is sleeping a lot, very weak etc he may be at this point as well. It was honestly a blessing for my mom to get him into a facility it was so difficult for her to care for him at home. I’m so sorry. It’s just so hard.

[Anonymous]

My FIL has advanced Parkinson’s, and cannot walk. He’s been declining for years, and about 2-3 years ago my husband and I forced his parents to hire in home help (we live far away and both work full time, my husband helps as much as he can but can only go back once a quarter). They hired help, and things are tolerable now, although FIL refuses to consider a nursing home.

A few things - if he falls, and your mom can’t get him up (this should be every time he falls - she should NOT lift him), your mom can call 911, explain that it is NOT an emergency, describe what happened, and paramedics will come lift him off the floor.

Hospice has a program for people with long term illnesses, my in laws get bathing help a few times a week, a nurse comes in to check in once a week, and they have a respite care facility that my in laws refuse to use. They could use the respite care a few times a year for 5 nights for free if they would do it.

[Anonymous]

I lost my Dad to Parkinsons and I think you know you are heading towards hospice. You could probably get some home PT if it will make your mom feel like she tried everything. Maybe check in with his doctor to see if he recommends it at this point. Sounds like you really need help for them at home...or look into a skilled center. My Dad did not get Covid at rehab. He did get Covid when he was just at home.

[Anonymous]

Similar situation and it’s gut wrenching. I think at this point it’s a question of focusing on what your mom and dad’s wishes are. When you hit this point it can help to look at their advanced medical directive and really assess quality of life and what the person before the disease would have wanted.

It will be very hard to accept for your mom. Sleeping a lot and repeated falls were a sign the end was near for my loved one along with weight loss.

Hospice won’t provide 24/7 care or anything like that. It will get you supplies and ensure a peaceful passing because that’s their entire focus (bathing, massages, hospital bed, nurse visits as well). That being said, once you elect hospice you can’t seek treatment. For example, he won’t be able to receive IV antibiotics and may have to stop medications he is on. If he falls, hospice will send someone to check on him and determine if he needs to go to the hospital or can stay home. The focus is always on reducing hospitalization and on comfort care.

Rehab, skilled nursing, and assisted living won’t provide 1:1 supervision. He will fall there just like he does at home and then you have to get used to staff, different care than he’s used to, and new issues. Medicare will only pay for rehab if he can participate. Can he and would be want to be forced to do OT/PT for several hours a day?

I would probably do a hospice assessment. It was very hard to make the decision to enroll (and we even enrolled and disenrolled and later enrolled again!). But I’m glad we did it because the condition turned on a dime. The hospice workers were amazing and I was able to arrange cremation, etc. ahead of time because they helped me prepare.

[Anonymous]

This is so tough. There is no right decision. You have to do what is best for everyone, including you. My dad did not have Parkinson's, but ended up in needing full time care. His wishes were to receive care at his home. However, he was in VA and I was in MD. I made the decision to move him into assisted living closer to me. I had to make the hard decision to go against his wishes, but I could not manage round the clock care for him, without completely disrupting my life, work and family. Even with 24 hour care, I would have been the one who would need to take him to doctors, which seemed endless. And what would happen if the care providers didn't show up. I would be the one needing to take off.

He did end up receiving hospice care, but that was not round the clock care, it was an hour here and there for specific things.

You can only do what is best at the time for everyone. It may not be what they want or what you want, but it is what is best. There is no right way to do this.

[Anonymous]

Anonymous wrote:This is so tough. There is no right decision. You have to do what is best for everyone, including you. My dad did not have Parkinson's, but ended up in needing full time care. His wishes were to receive care at his home. However, he was in VA and I was in MD. I made the decision to move him into assisted living closer to me. I had to make the hard decision to go against his wishes, but I could not manage round the clock care for him, without completely disrupting my life, work and family. Even with 24 hour care, I would have been the one who would need to take him to doctors, which seemed endless. And what would happen if the care providers didn't show up. I would be the one needing to take off.

He did end up receiving hospice care, but that was not round the clock care, it was an hour here and there for specific things.

You can only do what is best at the time for everyone. It may not be what they want or what you want, but it is what is best. There is no right way to do this.

Hugs. I went through something similar with my mom at the end of her life. We had the funds for a very nice facility which had levels of nursing. We paid for this for 2 months before mom passed, and she had hospice come in as well (they were pretty unhelpful to be honest - wouldn't stay with her on her last day so I could grab a shower, not particulary supportive to family members).

If you choose the option of going to the ER and then getting a case manager - be 100% warned they will try to get you to do home care. This was even the case when I lived 4 hours away, and sibling 1 hour away, both with jobs and young families. YOU will have to do the leg work to find a facility, but once you do, the hospital will work with you to transport, etc. We were an Innova Fairfax. I felt judged, for sure, and my mom who was not in her right mind was ranting about going home, so this was enormously awful and stressful but we did get the support/services we needed at the nursing home facility, and the staff were kind.

[Anonymous]

Thank you all for the helpful information! We are at the ER now on the recommendation of the VA nurse as well as the visiting nurse who came today. They are admitting him.