Hi all, Dad (81) has been diagnosed with PSP. We now realise he has had this for some years, but was misdiagnosed. Common theme, I know.
It of background... He is currently in hospital, is on a PEG (nil by mouth) and is recovering from aspiration pneumonia and malnutrition (resulting for the poor care he has received over the last 2 months in hospital). The 'care' in hospital has been horrendous and the medical team have acknowledged this and apologised profusely. Too little, too late.
We have been advised to look at nursing homes as dad now needs 24h care. I know many homes won't take patients with such conditions. So, what would you be looking for, particularly, in order to make your decision about where is best? I'd especially love to hear from those of you with experience and hindsight.
Having experienced such negligence in hospital, and the fight we have to have (daily) to have his most basic needs met, we are very concerned about making the right choice for him moving forward.
All advice much appreciated xx
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Nicgcc
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Sorry to hear of your dad’s experience in hospital. Having been hospitalised twice last year, and being an able bodied too, I am not surprised. Not a place to go to if you can help it. But grateful that I am alive today.
For Nursing home. Find one near you that has good reviews. I think it’s important to visit and talk to the manager and staff. First impression of the place is important. Friendliness and cleanliness. Then have a trial period of respite for at least 2 weeks before making a decision for full time stay. Personally, even the best Nursing home is often short staffed. It’s important that family visit and check regularly the condition of their loved ones. Are they being looked after? Are they happy there? My husband would put his thumb up to show this.
I visit my husband every single day. Very happy with the main personal care where he is. High turn over of care staff but the qualified staff remains the same. The pampering is done by me ( hair wash, nail care, extra mouth wash etc) they are friendly and respectful. Not perfection but it’s put my mind at rest and given me life outside caring. The time spent with him daily is never a chore. He has been there since last July and into his 11th year of PSP. He is also PEG fed.
All the best with dad, I hope you find him a good ‘home’ .
I would priortise the location of the home where he will get the most visitors. I dont believe there is the perfect resthome. There are more residents than carers and inevitably leads to events where you will feel care is subpar. Its about making sure your Dad is safe and comfortable and at ease even if you are not. My Dads been in a home now for 8 months, and I have only just learnt to let the home do the care and I now focus on visiting him as a daughter and resthome advocate.
We’re currently in a similar position. Mum was discharged to a nursing home from hospital for 4 weeks as she wasn’t fit to return home. We realise now that she needs round the clock care and we have been visiting nursing homes for a permanent placement. We’ve involved Mum as she will be living there and paying for it. Unfortunately she hated the one which would have been central for optimum visitors even though it had really good reviews. You also need to be looking at the CQC rating.
Ask friends, neighbours, colleagues if they have used a home near you, and also check CQC reports.
Does the home cater for people with PD, MS, MND, Huntington's - if so they will be a good start - remember, this is not Dementia, ensure your Dad will not be put in a dementia wing - it can be very upsetting for someone who does not have dementia.
Don't judge it by the perfect décor, it's the staff who will be taking care of your Dad who you need to pay attention to.
Ask the question: What can you tell me about PSP? The best reply I got was 'To be honest I Googled it last night' - that was the home I chose because of their honesty! One beautiful looking place I visited (my Mum's choice), said they'd had quite a lot of people with PSP in the past and knew a lot about it! The same place had everyone in their room by 6.30pm at night with the tables already laid for breakfast!
What activities do they provide, especially to anyone who may become bedridden. (including how often do you bath/shower the residents!). They could organise music, massage, hairdresser, someone to read the newspaper or book, someone to chat (even if it's one way), are pets allowed (yours) or pet therapy ....
Visit the home a number of times, including at mealtimes, early evening and first thing in the morning.
Ask the staff ratio especially at night. Ask visiting times. Ask if they would accept training if it were offered.
Make a list of questions and tick the box as you go along, ask the same questions to each home you visit.
Sorry this is so long-winded, I hope it doesn't put you off, there are some really super homes out there, we only usually get to hear about the bad ones though.
My final piece of advice to keep in mind - ask yourself would I be happy here or would I leave my child here.
Sending best wishes to you and you family, hoping you find the right place for your Dad.
Kasenda pretty much covered my advice. If you have hospice care available see if your Dad can get as you can have hospice care in a nursing home and atleast it's another set of eyes looking after the care.Unfortunately I do not believe there are any good nursing homes. They all seem to be understaffed and you just get the team of nurses educated on PSP and they are gone.
Not one nurse knew about PSP when my husband went for respite care.
The home should have up to date equipment and if physically possible can get your Dad up even into a chair and give occupational and physical therapy even in bed. They need to understand enteral feedings and what to look for if digestion slows etc as aspiration can occur even with feeding tube.
My husband takes an hour or more to eat with me reheating his food atleast twice. He has to be fed and was ordered a "mechanical feed". When he was in respite they would give up on him and said he was taking to long and took his tray away. So needless to say he lost weight he really couldn't afford to lose those 6 days.
Unfortunately, as with the hospital, you are still going to have to be on top of things and be a constant advocate.
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