Feeling of Helplessness

[maeve]

I have just taken my sister to a nursing home where she will be looked after 24/7 - extremely well I hasten to add. Why do I feel that I have failed her because I cannot look after her because of the problems with transferring between wheelchair, bed etc. Also the constant lack of sleep and having to get up during night to see to her. It is not a step I have taken lightly nor wanted. Why are there not more nursing homes offering care to younger people. I have tried to find them in this area and drawn a blank. PSP affects younger not only older people. There needs to be more emphasis and help for younger patients who need 24/7 care . What fellow bloggers have you found in your area with this problem. Is it something that needs to be addressed countrywide?.

Maeve

[jennifer-nind]

Hi Maeve

Oh I know so well how you are feeling. I had to make the same decision 3 years ago as I could no longer cope at home with the care package, I was totally worn pout and on my knees. I found a nice nursing home and Ray spent the last months of his life being looked after far better than I could care for him at home.

He passed away in April 2012 at the age of 58.

This is a decision that is so dificult to make as we want to keep our loved ones at home.

But Maeve, thing positive, just think how much wonderful quality you can have visiting your sister and helping her with day to day living knowing that you can get rest at night making you fresh to visit and keep her cheerful, safe in the knowledge she is being well taken care of.

How old is your sister?

Ray was formally diagnosed in September 2006, after mis diagnosis of a stroke in July 2005. He was 55 when he was formally diagnosed with PSP in 2006.

God Bless.

Love and Hugs

Jenni XXXXX

[maeve in reply to jennifer-nind]

Hi Jenni and MJ Mark,

My sister is only 62 yrs and was diagnosed properly in 2009 . I know, looking back, that the symptons were there long before , maybe 3 or so years .

Maeve

[MJ-Mark]

I was aware that younger people can get psp.....but 58!? Wow Jenni, I am so sorry. I am so sorry. Maeve, you did the right thing....and I am sure your sister understands. Take care of yourself.

MJ

[nightmare1]

Hi Ive just lost my husband of 52 yrs i got to that point where i dont know how much longer i could of gone on for i took him to hospital 17th december 2011 and he passed away 22 february its not nice to watch and to be so helpless Im sure your sister will understand and you obviosly need the rest tale care of yourself

[salem16 in reply to nightmare1]

Yes it. Hard my husband passed away mid July 2019. I still not have over grieving him. It never bothered me in house before now it does. I still cry a lot so hard watching him die. I think I hear him on house at nite rather eerie.

[dllera]

Hi Maeve - This is a very hard decision and a very personal one. You have to act in the best interest of all involved and that does include you. My only advice is to be very involed in the medications and treatment of your loved one. Not every nursing home has had to deal with patients with PSP. You are still in control of her care and need to direct the home. Check and read the daily logs and make sure you ask your sister about her care. I do not want anyone to go through what we went through - -trust but verify!

[maeve in reply to dllera]

Hi dllera,

Thank you for your advice . I do check on her care, relationship with staff etc, and told the matron I want to be actively involved in any decision making concerning her care , medication etc. There is no easy answer to this problem. I just wish I had unlimited energy and six pairs of hands then maybe I could have coped and kept my sister at home. Unfortunately I haven't.

Maeve

[salem16 in reply to dllera]

I agree Re meds. They left too late for feeding tube. 7 days no water or food. Pain pills in Canada not enough. I still have nightmares. I not well live alone I scared at nite more now then before.