PSP Association
5,424 members7,452 posts

New here - my father has PSP

Hello, I’ve just joined this board. I don’t expect easy answers, but just wanted somewhere where people know what it’s like.

My father has PSP & my mother is his carer (with assistance a couple of times per day). He’s currently in hospital recovering from pneumonia, had a nasal feeding tube fitted a couple of days but pulled it out today. Chokes when he eats. The hospital recommend a PEG, and don’t think he’ll be well/mobile enough to get out of bed again.

He finds it very hard to speak, but he can still understand, so the fitting of a tube is his decision.

I live a couple of hours away, so visit for a weekend when I can, but otherwise keep in touch by phone. I feel helpless not being there, but there really isn’t much I could do in any case.

Thanks for letting me vent a little.

20 Replies
oldestnewest

As long as he knows your calling and talking with your Mother that's a good thing and your Mom has someone to talk to. When you talk to both of them just talking about of course how your Dad and Mom are doing and your every day life. So that, they know what is going on with you.

Pneumonia is a hard thing to get rid of I had it and I was in the hospital for eight days then was home for seven weeks.

Just hang in there everyone knows it's hard for you to be there every day you do have your responsibility.

1 like
Reply

Thanks for replying. I think the infection is cleared, but he’s still coughing and seems a bit up and down. We’re going up to visit later this week.

Reply

Welcome to the site. Pneumonia can be hard to shake when you are otherwise healthy. I am sure your parents appreciate the calls and visits when you can!

Ron

Reply

Like most people who have a family member with PSP, I just wish I could make it better!

3 likes
Reply

Welcome to the site my husband has PSP, horrible illness. I am sure your mum knows that you are just at the end of the phone, if she needs you, at least you visit when you can. Yvonne xxx

Reply

There are never easy answers but there is advice and support to help guide you through PSP which is priceless. You'll help your Dad loads just by joining the forum and reading posts, not everything will apply to you but it prepares you for what's to come and how to deal with it.

1 like
Reply

Thank you. His PSP is already very advanced. I don’t know how much more there is to come.

Reply

So is my mum's, we've gone from eating one weekend to having a Peg fitted. The rate of progression has just been shocking. We're all in the same boat, not knowing when exactly the next change will take place but we know it will.

Reply

Before he went into hospital ten days ago with a chest infection that turned out to be pneumonia, he spent his days sitting in a chair, and ate normal food, although my mother had to feed him. Now they want to fit a PEG and say he won’t get out of bed again. It’s been that way before — he has an infection or something, and there’s a step change in his condition.

Last year it was a urinary tract infection. Before it, my mother could get him from wheelchair to car & they could go to a pub for lunch a couple of times a week. Afterwards she couldn’t manage it & he wasn’t up to eating out in any case.

Reply

All we can do is hang in there and be there for them, support them and love them. All the best.

1 like
Reply

Sounds as though we're at the same stage. My dad is in respite care for two weeks, and he's gone downhill so quickly in one week. He was talking and eating and now he can't talk and is choking on everything, can't breathe and is now having a nebuliser. He looks awful. Thinking PEG tube isn't far away. The change has been so rapid and shocking. It's so sad. I know how you must be feeling!

Reply

It helps just to know you are not alone. Its a bleak prospect and you can only do your best to support your parents.

They will appreciate your caring.

love from Jean x

2 likes
Reply

Hello,

I'm so sorry that your Dad has PSP.

I'm sure your Dad and Mum know that you're doing what you can to support them.

My brother has PSP - diagnosed a month ago. I live a couple of hours away and so it's my sister and her husband who provide the day to day support. Even though I visit as often and stay for as long as I can, call him twice a day and try to support my sister supporting him, I recognise those feelings of helplessness - and in my case guilt - that I'm not doing, can't do more.

But as others have said - your visits and calls will be a great support to them and giving your mum someone to talk to invaluable.

Here - as others have also said - you'll find advice and guidance and hopefully (as I have) some comfort from being able to talk to people who understand.

Erica x

Reply

I’m sorry to hear about your brother. It’s such a horrible illness.

1 like
Reply

Thank you.

Reply

Venting is so good for you. Please stay in tough 🙏💛

Reply

So sorry to hear about your dad having PSP. My husband was diagnosed last year and unfortunately had deteriorated quite rapidly since Christmas. He can eat food if I cut it up small and feed him but recently has been coughing and choking while he is eating. This is a horrible cruel disease and so hard to live with. He sounds very similar to my husband in that he understands everything but finds it hard to communicate. Hope you find this site helpful. Take care

Reply

It’s a dreadful disease. Try to take care of yourself, and arrange a little time off if you possibly can, even if it’s just the odd hour from time to time.

Reply

I'm just now reading your post, hence, this late reply.

I am the full-time caregiver for my husband who has PSP. We just celebrated his 73rd birthday this past week with our son who was visiting.

While I do have 10 hours help per week divided over 3 days, the physical wear and tear has been difficult. Prior to his diagnosis several years ago, he has had symptoms since about 12 years ago. He now needs assistance with all ADLs (activities of daily living -- bathing, eating, toileting, transfers, and "walking" with walker or gait belt. We are nearing the point where he will no longer "walk" even with assistance for fear of falling (which has happened).

The amazing efforts he continues too make include attending a weekly exercise class designed for PD patients who workout while sitting. He also does daily exercises in bed which keep him strong ( single leg lifts, knee to chest, bridge pose, double leg lifts, squats while holding a rail, stand on toes while holding a pull up bar) We recently decreased 30 reps each/ 2 sets of 15 to 10 reps twice. He just got too fatigued.

His speech is nearly gone. He understands but long delays in response make it difficult for others to communicate. There seems to be some cognitive loss but less than what it appears.

Our son comes to visit when able. He is an awesome caregiver and steps in to take care of everything when he is here. Lately he has expressed frustration when he feels that his father is ignoring him. For example, when asked about food, his father responds immediately. What I believed and confirmed with my husband was that the delay (long) when responding to a question from our son was because he was trying to think of how to say what he wanted. The struggle to find words in response to a serious question leads to delay and frustration on his part. At the same time, little yes/no questions about the mundane seem superficial and meaningless. Once we all discussed this, our son felt less angry (only to have guilt fill in.)

I can not imagine the sadness and fear watching one's father decline -- and to imagine if he too might follow the same horrible path.

We recently this past month enrolled in home hospice which provides 2 one hour visits per week as well as nursing visits and a social worker visit. In truth, it's too much but I do appreciate the nurse aides help with showers. The reality of end of life issues related to home hospice surely hits home with our son. He's a grown man himself but who is ever ready to face the decline and death of an adored parent?

I hope you gain some peace as you work your way through this difficult path with your father. I am always reminded, "That which doesn't kill you, makes you stronger." However, most of the time, reading and hearing that just pisses me off! : D

So glad to hear you stay in touch with your parents, especially your mother. I, for one, am so grateful for calls from my son. I try not to burden him with too many of the details. However, I'm glad that we are in this together even if from afar.

Cheers!

Reply

Thank you. I’m so sorry you’re going through this too. And your husband is younger — my father is about to turn 84, so I feel that PSP won’t necessarily have shortened his life very much, but it has made the last few years very hard.

My father went from the hospital to a nursing home. His condition is fairly pitiful now, but the staff in the home are very good, and it’s close to my parents’ home, so it’s easy for my mother to get there often.

It’s a difficult time.

Reply

You may also like...