Home Care

[Granny29335]

Do you think it is possible to keep my husband home the entire time of the illness or do I need to plan on long-term care in a facility. I'm in the US and everything my husband has worked for all his life will be swallowed up when Medicaid steps in. I'm trying to figure this all our. We only got his diagnosis at the end of March. Thanks for any direction.

[Kasenda]

Dear Granny, sorry to hear of your husband’s diagnosis. I looked after my husband with PSP at home for 8 years before I had to put him in a Nursing home due to my own health problems. I consider myself healthy at the start of the journey, but the stress and physical work of caring finally got me to accept that there was no choice in our situation. We had carers four times a day which added to only an hour of help a day. I think too that the work got harder as he deteriorated and I got weaker. If you are supported by family and friends around you, that would help too. But that’s our journey and I am sure there are many others who managed to keep their loved ones at home till the end. I think to take each day as it comes for now and to accept as much help offered to you along the journey. I wish you all the very best.

[Granny29335 in reply to Kasenda]

Thank you very much for your response.

[Heady]

Yes. It is possible to keep your husband at home. BUT! Only if you accept you will need lots of help. If you try to be super woman and think you can do it all, you will fail. My husband died at home. I survived with full support from my family, carers coming in and the last year, Steve went into a respite home every few months for a week, to give me a rest. It was about to become full time, as I couldn’t cope any longer, but he died before I could arrange it. Your health and well being is the most important aspect of your husband’s care, if that dips your husband will suffer. Whatever you decide, I wish you well. The PSP is not easy for your husband or for you. Remember you signed up to be a loving wife, not a carer. Of course you can be both, but never, ever forget the first! Your job is to provide the best care, not necessarily be it.

Sending big hug and much love

Lots of love

Anne

[AnneandChris in reply to Heady]

Hello there

I agree with Anne, it is possible but you need to accept all the help you can get. Both Anne and Steve, Chris and I were on our journeys at about the same time and we both gained tremendous support from this site.

Chris and I had downsized and bought a bungalow when we retired, so that was a plus. After his diagnosis we made other modifications like converting the main bathroom into a wet room.

We are in the UK and were fortunate to have the NHS and a wonderful GP, super district nurses and a team of lovely carers too help take care of Chris. He had two rounds of respite, the first more successful than the second which was, as it happened, three months bedore he died.

His journey from diagnosis was 4.5 years with most of the deterioration over the last 18 months.

I hope this helps, I know things vary from patient to patient and how this disease is treated from country to country.

Please look after yourself, as a carer you need to keep on keeping on.

Hugs

Anne

[Granny29335 in reply to AnneandChris]

Thank you very much!

[Granny29335 in reply to Heady]

Thank you very much for your response. I think this is wise advice.

[Sebuly14]

I was able to keep my husband home with help from paid caregivers. It was worth it!

[LuisRodicioRodicio]

Hi Granny29335!

I'm sorry that PSP has entered your lives.

Whether the patient with PSP spends his illness at home or in a Residence is a decision that each family must make based on their circumstances, available insurance, health of the main caregiver and the available economy.

According to my data, from the PSP diagnosis (generally 2 years after the first and elusive symptoms) the statistics indicate that "normal" is a process that lasts from 6 to 8 years. The PSP-Parkisonism type can be more prolonged.

We decided to care for the patient at home (24/7), in their environment, with the following limitations:

1) Dementia of the patient.

2) Additional illness that requires hospitalization of the patient.

3) The main caregiver is at serious risk of becoming ill due to excessive stress.

4) Not getting the right equipment to help the primary caregiver and give him regular breaks.

5) Risk of economic collapse.

In our case, the patient was at his house until the eve of his death.

In our case, the main caregiver was me and I was able to form and manage a team that provided the necessary services, allowed me daily rest periods and "holidays" of 10 days, twice a year.

Medical and hospital needs covered by insurance, the annual cost of the rest was between €50,000 and €55,000/year, which was covered with savings, pensions and a small aid from the public administration.

I hope I have been useful to you.

Hug and luck.

Luis

[Granny29335 in reply to LuisRodicioRodicio]

Yes, thank you very much.

[Mad-about-animals]

I have my husband at home and have done the whole time, I have Avery good support network with professionals but it's difficult, sadly my husband is near the end but I was asked would I do it again and the answer is YES he wants to be at home when he goes so that's what is happening. I don't trust care homes to give my husband the 24/7 care he needs because when he went for a week respite things were not done and he came home with extra problems he should not have had, care homes cannot give the care that I want for my husband as they have other people to care for.What I will say is do what is best for you and your husband and always accept help offered by others, most of our neighbours have been amazing and still do whatever they can for us both.

My husband only received the diagnosis of PSP/CBD 2 years ago after lots of other diagnoseses. It really needs more research and awareness 💔😢

[Granny29335 in reply to Mad-about-animals]

Thank you very much!

[LuisRodicioRodicio in reply to Mad-about-animals]

A big hug.

Luis

[Becky4321]

I agonized over that decision, but last year we took a trip to visit our son and my husband stayed at an assisting living/nursing facility. The plan was for a 4 week stay. It soon became apparent that he was getting better care than I was able to give him. So he is still there and I am living nearby in a rented apartment. Not perfect. But I spend 4 or so hours with him every day and he gets to see our 2 year old granddaughter frequently. Also his caregivers dote on him which makes me happy. The cost is ridiculous, and I’m looking for alternatives. My own life seems to be on hold and I’m trying to work on my own spiritual path and general attitude!

[LuisRodicioRodicio in reply to Becky4321]

Hi Becky4321!!

I'm glad you found a favorable solution to all parts of the problem.

Hug and luck.

Luis