Hi everyone, I’m not sure why I am writing this but feel I need to off load. My dad who’s been diagnosed since 2020 has been through an awful time. Dad has been in a residential home since April this year, has fallen a lot, in November he fell and broke his hip, once in the hospital he also fell off the chair and broke his nose, then after all that he got pneumonia!! They managed to get it under control and sent him back to the home after 3 weeks. Dad wasn’t eating in hospital really as he is now struggling to swallow so they put him on level 4 puréed diet and thickened drinks. But dad wouldn’t eat. Back in the care home after 2 days I got a call as an ambulance had been rang as dad had gone really downhill and his breathing wasn’t good and could hear crackling on his chest, I got there before the ambulance and sat him bolt up right, to which he coughed up lots of crap and then I gave him an extra scoop of thickener in his drink and he took 3 beakers full of juice. That seem to bring him back round and everything calmed down. Ambulance staff said he could of been aspirating but everything was all good. Over the next few days dad was ok, managing only a few mouthfuls of yoghurt and drinks, which was concerning but no one seemed to be bothered. Yesterday I had another call, dad couldn’t breathe and an ambulance had been called, I dashed to be by his side and again he was aspirating, luckily the ambulance got him straight onto the respiratory assessment ward and he had an infection again so treating with antibiotics and he is extremely dehydrated so pumping him with fluids too. I’m not sure if anyone has had to deal with this, but surely this is going to happen all of the time now, I have spoke about a peg feed but not sure of the pros and cons of this? But we can’t leave him not eating or getting the right consistency of drinks. He has lost 3 stone in weight in this past 8 months and I don’t think he has got much fight left in him. He isn’t mobile anymore since breaking his hip either.
Any advice is very much appreciated
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Kelly2807
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Oh I feel for you! It sounds like the nursing home are struggling to support him, and I know what that feels like. Mum’s home know that mum can’t feed herself or pick up a beaker but they leave a beaker on her table as though she’ll just take a drink between meals! It is dreadful to say this, but I do wonder whether your dad is trying to give up and needs support to do that. Or is he wanting to fight on?
I agree with your thought about why this is happening, messier. Medical support homes can be awful. Little known fact: 15 percent of residents die from UTIs. But I’m wondering whether he’s giving in to a natural process — not giving up, but allowing a natural process to do its job. I’m sorry too if I’m offending anyone here. This is an awful situation.
I do so sympathise with & understand your situation Kelly2807 as I have been through it with my wife. I was able to mitigate so much of what your Dad is going through by having my wife at home & the personal attention I was able give to the nature of her food as her swallowing became more difficult. This is something the care home staff have no training for. I find it frustrating being unable to convey here what needs to be said to be helpful. Puréing and the consistency of it that has to change as the condition progresses, is key. Thickeners to liquids also. Those with PSP have no ability to assess risk and in their minds can do all they used to do without thinking hence the unbelievable accidents they have. I wish one was able to verbally relate experiences.
Hi, sorry to hear what you and your dad are going through at the moment.
You mention he is in a residential home- do they also provide nursing care? Mum went into a home with a nursing floor as no residential home would take her. Maybe we have been lucky, but the nurses are really pro active in dealing with changes in her condition. Maybe check if he is in the right place.
Also, are you in contact with a speech and language therapist? If not, ask to be referred via the GP. The speech and language therapist will be able to give advice regarding feeding and also guide you through the tricky conversations around a PEG.
Best wishes to you and your dad, it’s such a rubbish conditionxx
hi Kelly sorry to read this. My mother had a PEG fitted 2 weeks ago and has reduced the stress around eating, choking etc. we were told pegs are best fitted sooner rather than later as some patients get so weak that they can no longer that the small op to fit them. My mother has support from Parkinson nurses who recommended the PEG.
There is a small WhatsApp group of people supporting loved ones with PSP. If you’d like to join, please let me know and I can send you a link to join.
We have not experience, but seems having a PEG fitted does not make the problem go away totally, as he can still choke on saliva.
“Hi Caya” wrote:
“If the PEG tube is appropriate it depends on the patient:
If the patient has a good quality of life, which means they can walk, watch TV, go to the mall, read the news, to friends etc and suddenly lose the ability to eat and drink then could be OK..
But if the PSP is already advanced and they are fast failing, then it's not recommended since it's just prolonging their misery”.
Please to search for "peg tube" on PSPA fórum or others for other people's opinions.
One caregiver wrote: “My dad had one and i would never recommend it for a late stage patient (it wouldn't make their PSP better or improve their cognition etc).”
On 2021-07, Dr. James Rowe points out: A PEG tube does not exclude eating for pleasure: favourite food and drink can be a continuing source of enjoyment and social engagement, while the PEG handles the bulk nutrition.
Today they have moved dad onto a ward and are now discussing a peg feed to be fitted, he has pneumonia for the 3rd time. Today they are going to fit a NG as temporary until the doctors are back in after Christmas and we can have a meeting to sort out the peg feed. Dad hasn’t given up, since having fluids and antibiotics pumped into him, he’s coming round and communicating with me. I have explained to him about the peg feed and he said he will have it so fingers crossed we can start getting him stronger!
As for where he is living, I don’t think he is in the right place, I moved him to my area to be closer to family and there was only one home that would take him because the social worker stated he was residential and not nursing, unfortunately we have an absolute idiot of a social worker who can’t be bothered to come to dads new area and do a review and the new area social team say dads not their responsibility. I’ve been asking for CHC funding trigger to be done but no one here will do it, I will ask with the hospital to see if they can help.
It’s so frustrating as I have to explain over and over again what PSP is .
Thank you all for your responses though, very helpful to know I’m not alone 🥰
From your description, it would seem that the care at the residential home is less than desirable.My wife is in continuing care because I could no longer take care of her needs even with home care.
She is now wheelchair-bound, has to be fed pureed food, and can no longer swallow. She has to be bathed, get dressed, have her teeth brushed, etc as her condition steadily progresses downhill.
We have been fortunate that specialist care by a team of speech pathologists, occupational therapists, dieticians, and a doctor is available at the site and their advice has been a huge help. They meet with the floor manager and staff to provide. the direction in care management.
I visit every day and monitor her condition ensuring she is exercising and participating in social programs for the residents.
Is your father getting the level of care I have described above? Does he need a care giver for part of the day that would be privately sourced?
I should make it clear, we live in Alberta, Canada and I do pay a monthly charge for a private room, TV cable services, and laundry. The remaining services are provided at no additional cost through the Alberta Health Service.
I wish I had advice for you but this disease was so unpredictable in the way it affected my mother that it’s hard to know what to do.
Ask those caring for him what they know about PSP; even our 30 years of experience palliative care nurse had never treated a PSP patient. You may have to educate them.
Be patient & gentle with your dad, other family members and with yourself as the PSP journey is exhausting & difficult. Visit him. Love him. Thank him for loving you.
Hi, I would make contact with your local hospice, it is amazing what help, support and care they can provide. We organised this through my mums GP and now have hospice at home support (although some hospices can offer in patient care too). As soon as we had the link with the hospice they have been invaluable with guidance, advice on care and keeping mum comfortable. They have the specialist knowledge on care. We have learnt that a hospice is not just about the last months and days but can help at any stage of a terminal illness and we would have been lost without them. As always, you still have to educate on these rare neurological diseases but the care and time to listen is there with the hospice and they have understood very quickly. I hope this helps.
Definitely contact Hospice. Often, people wait too long to contact Hospice. They have been wonderful for my mom. She is in a nursing home but hospice offers extra support. They can make medication changes much quicker than staff at the manor. They also provide extra one on one time with mom. Offering extra baths, feeding support, counseling - they are wonderful.
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Symptoms that come and go?
Someone has to stick up for our families.
Getting through the day
My father is now at peace from PSP
You are never prepared for it 😢
