Cost of home care

[slm619]

New to this board. My dad is in mid stag3s of PSP — he is currently in an assisted living facility that used to be a school so it just is not equipped to handle his mobility issues. We tried to place him in a more equipped facility but he was deemed too much of a liability due to fall risk. Thinking of bringing him in our home and modifying to accommodate needs. My dad just sold his home and has assets plus a pension so likely wouldn’t qualify for much help now. However, once assets running out due to caregivers, home modifications etc. would he qualify just as someone in nursing home qualifies for care. We just worry about bringing in home and then running out of money to pay for care. Just know we may eventually need pricey 24/7 skilled care and want to know others experiences. Thanks,

[Kevin_1]

Hi

Welcome to this forum. It's friendly and supportive.

Yes, doing the best we can for our loved ones becomes so difficult when we start looking at the budgetting, Tough for most of us.

What country are you in. There are folk from all over here and when we know where you are folk from your locale can step in.

Warm welcome.

Kevin

[slm619 in reply to Kevin_1]

Ah yes - US in Pennsylvania

[Kevin_1 in reply to slm619]

Hi

I'm a poor humble Brit. I can't help here.

I do so understand your problem though. How long is a piece of string and what does the future hold re. financial planning? A nightmare.

There are some seriously well informed Americans here. I will leave this to them.

Wishing you the best.

Warmly

Kevin

[Caro2132]

Hi - we are in Northern California. A couple of suggestions : have you contacted the VA to see if you can get assistance from them? My husband Mike was diagnosed in 2017 with PSP and we reckon he is mid stage now so we signed up for the palliative care registry, your GP can do this. Then we signed up for hospice, again your GP or neurologist can send the order . They will supply home health care, regular nurse visits and a social worker is assigned who can help with respite, nursing home etc. I suggest this needs to be done sooner rather than later, there is no longer the expectation of end of life in 6 months, Hospice is geared to helping with diseases for which there is no cure, like PSP etc.

Good luck

Caroline

[Boyce3600 in reply to Caro2132]

Interesting that you say hospice will provide Home Health Care typically in hospice there's no physical therapy no occupational therapy no speech therapy no heroic Measures just to keep them comfortable can you explain what you get or know that you can get with home health care if you're in hospice

[Caro2132 in reply to Boyce3600]

Home health care is just that, help with bathing. Dressing and eating. None of the therapies but massage therapy has been offered. In our experience PT, OT and Speech help at the beginning stages of the disease but don’t provide any support later on.

[Dadshelper]

Welcome to the site. I cared for dad, CBD, I my home for about 3 years. He first just need a bit of help but by the end he was at 100% dependency. I made several small-to-medium modifications throughtout the house those 3 years but he progressed to the point where most where not used anymore. In the US home care will cost $20-25/hr if you use an agency, less if you find a person or 2 but then you are responsible for taxes, background checks, etc.

As Caroline stated if he is a Veteran get the VA involved, if not start the process for Medicare even if not old enough yet. There are exceptions to the the standard 65 years of age rule, one being incurable diseases.

Ron

[AJK2001]

Everyone's journey is different but my Mum was able to stay in her (wheelchair friendly) sheltered accommodation until the very end. We had some challenges along the way but Mum had spent 6 months in a nursing home and hated it so was prepared to make compromises (not moving out of her chair unless someone to help, wearing incontinence pads in case of needing toilet between carer visits, etc). We had times when PSP risk taking showed itself & some trips to A&E because of this (she also had falls in the home which required A&E to stitch her up, so nowhere is completely safe) but generally it worked very well. She had carers 4 times a day and I spent afternoons with her, which was the time she was most likely to get fidgety. We had her bathroom turned into a wheelchair friendly wet room, she had an electric bed & stand aid, but she was still able to weight bear until a few days before she died, so there wasn't a huge amount of money spent on adaptations & equipment. There was a cost to the amount of care (we are in the UK and got funding towards the end but the majority Mum paid for) but it was much cheaper being at home than in a home and all that time the carers spent with Mum, which when she was in a home, she had much less actual 1 to 1 time and less able to form relationships with carers, whilst the home carers became friends. Mum was much happier, so for us it worked.

[Marilyn_cbd12]

Hello and welcome. We are in southeastern US. The VA has been a godsend to us. I would encourage you to explore the resources there. You don’t have to be a veteran injured in combat to qualify for services The VA considers my husband age 74 “catastrophically disabled” and has modified our home to meet his needs. Can’t say enough good things about the care. The VA knows a lot about Parkinson s because of Agent Orange and is “tuned in” to those needs which can be helpful to a Parkinsons Plus syndrome patient.

Marilyn

[Hidden]

I am in Philadelphia, PA.

Had an occupational therapist walk through the house discussing placement of grip bars. I told her where I wanted them.

Had a stair lift installed to get Larry to the second floor to his bedroom. Had a lift chair in the living room to make getting him up and down easier on me.

A chair in the bath to seat him on to clean him up.

Bought a back support belt for myself to wear when moving him. Should have bought it long before I did.

Got hospice involved. It started as palliative care. Moved to home hospice quickly. You will probably have to push for hospice. The only last 6 months to live is not true with a disease like PSP. There is no getting better.

If he can get out to see a physical and speech therapist it would be good.