PSP Association
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PSP

I am new here and have been nursing my husband diagnosed with PSP, for three and half years now. When I say nursing he is unable to do personal care and wont accept careers . We have been married 43 years. His ability to walk is decreasing. The coughing after eating has increased. He refuses to be taken out just wants to sit in front of TV all-day which is one of my main concerns at present. I don't feel it is good for him Does this sound familiar to others in group.

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Hi and welcome

My husband when he was able did not want to go anywhere, like yours just sat in front of the telly, he is in bed all the time now so has no choice. I think my husband was anxious and worried in case he fell or needed the toilet, so just decided he would not go anywhere.

I can understand him not wanting carers, I have only just managed to get my husband to accept them, but he could see I needed the help.

So yes sounds familiar.

Welcome to the group there is slot of info and help on here, just ask, or if you want to rant and moan carry on, as we’ve all been there.

Love and hugs

Helen

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My husband also dislikes going out , he is in a wheelchair now, watches tv but not sure if he does watch it ? We have careers would not be able to manage without them, you must be exhausted. Maybe you should insist you have them, you are liable to make yourself ill, then who will look after your husband. Yvonne xxxxx

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thank you

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That darn toilet issue🙁lots of anxiety here, too. I assure him we can handle (an accident) I have everything we could need in the car, but still it looms over our heads. Just yesterday, we disrupted a bathroom full of men when I wheeled my poor husband in backwards announcing "lady in the room warning!"

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Hi Bingo, looks like we are at a similar stage as you. However my husband will come out and sit in the car while I do the shopping. (Not sure this is a good thing because he's usually in a huff when I return and points to his watch and tells me I've taken too long.) It's well seeing he never did the weekly shop otherwise he would realise groceries are continually being moved around in the shop and I'm not the only customer.

By the way, welcome to the group.

Best wishes Nanny857

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thank you

I am constantly shopping not sure if just to get out house or because I forget things Exhausted but see no end to the extended days from morning till when he finally decides to go to bed now nearly 1 a.m. Does not talk for hours and pops off to sleep some days for most of day. He has no idea of what I have to get through

For all my shopping nothing goes to waste. Feeding him is so difficult he has sent for the last few days back to the kitchen thank goodness for the dogs they clear all left overs

Thank you for response I am so tired

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Something that is frequently repeated by others here, is that you have to look after yourself in order to look after your husband, because if you get sick who will look after him. So please try and get some rest/sleep when your husband is sleeping during the day. Also see if you can get some help before you burn out.

Lots of love Nanny857 xx

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I am with you on that Nanny. I threatened to leave Ch at home as I was getting sick of racing around the shop feeling guilty. Now Ch waits on a bench outside the shop and sometimes we stop for a milkshake or a coffee plus we shop twice week now . This means he does not have to wait so long. He certainly can no longer walk around a super market.... V

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Like you, I was rushing round the shops, feeling guilty about keeping him waiting and even coming away with only half the shopping. So one day I just said if he wasn't prepared to wait he could stay at home - the time keeping stopped. We use to take in a coffee break but now he prefers to come home and have his coffee. xx

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Nanny857 - I got a great laugh from your story about shopping while your husband sat in the car. Boy, do I remember my husband being irate because it took too long. I would usually abandon the idea of making any further stops and just head back home.

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Hi Racinlady. I'm so glad you got a laugh. I too cut the shopping short, coming home with only half of what I set out for. As I posted to Crab2093, I said to him if he didnt want to sit and wait, he could stay at home. The time keeping stopped but I still find myself rushing round and still feeling guilty. If the supermarkets stopped moving everything around just when you got to know where everything was, it would be much more easier. Think online shopping may be the way to go... and delivered to the door. xx

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Welcome to the group that no one wants to be a part of. 😉 You are well understood! Bob and I will be married for 45 years on Sept 1 and although Bob still tends to most of his own personal care, his care about his appearance has definitely dwindled. He naps at least once a day and spends many hours in front of the tv. I don’t necessarily object to the tv-watching although I do wish he would get more exercise ... or any exercise at all! He is getting very weak. Bob has gotten to where he resists much of what I have to recommend/say ... I think he’s trying to hold on to his autonomy.

xoDorie

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..all too familiar.....

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Hi Doris we are similar in that W and I will be 45 years married 8 September. He has been given exercises to do by Speech and Physio Therapists but won't do them for me. So I asked our 7yr old granddaughter if she would like do the speech exercises with him and Bingo he does them for her. Then our eldest daughter was home from Australia 2 weeks ago and she got him out walking round our cul de sac. Before returning home she told him to keep it up as she would be checking up on him. Thankfully he still asks to go for his walk most days.

Funny how they will do things for others but not for us, who look after them 24/7. Lots of love Nanny857 xx

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Ain’ t that the truth? Bob always seems to open both eyes and speak more clearly whenever we see someone somewhere. (Which truthfully isn’t very often cause he doesn’t want to go anywhere.) Bob has speech exercises but never does them, making me the nag. 🙄

xoDorie

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Know the feeling of being the nag Dorie, but we are just looking out for them and trying to keep PSP at bay for just a little bit longer, if that is possible. Lots of love Nanny857 xx

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Very familiar!

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Bingo69

You are writing my story, been at it for a long while. But not about me.not familiar with your name so I thinking your new to our wonderful group.Ask away, lots of first hand knowledge and experiences here.. sorry you had to join this group.

See in BC

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Ben had no choice than to have carers in, he broke his hip and was hospitalised for weeks and they wouldn't discharge him until a care package was in place. He had already had all personal care done in hospital so had grown used to it. We started with one carer once a day to shower and dress him, it was a great relief to have someone take that chore away from me and I had time to go and get myself dressed in peace. Mostly the carer would stay for a cup of tea, biscuit and a chat which gave us a chance to build a relationship up with them. As the disease progressed we had two carers twice a day, to shower and dress in the morning and put him to bed in the evening. That was being extended to three visits a day but he died before that actually happened. I don't know how I would have coped without that support, they soon get used to having carers and it's vital for you as it's impossible to do it completely alone.

Ben also hated going out, he liked to listen to the radio most of the day and to in the evening. I had friends in for coffee and a chat but it is like living in a bubble. I did have two mornings respite time and went to yoga class on one of the mornings and often met friends for coffee on the other.his kept me sane.

Love Kate xx

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Larry’s life is watching TV now. From when he gets up in the morning to the last thing at night. He seems to forget most of the shows he has seen any number of times. I suppose that’s a good thing. He isn’t as bored. It’s TV and sleeping most every day.

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Yes it sure does. It might be that the lights are too bright. Put a pair of Dark sun glasses on him. And I'm new on here too. Just got my mom. She was living with 2 of her sisters with absolutely no quality of life. I'm in Florida and thank God the laws just past for medical marijuana. We have mom on the cbc oil which has allowed her to focus . Before her eyes were just wondering and her speech was almost nill. By the way my name is Christy. And I have to say this group is a god send. Where are you located ?

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I think we can all relate!

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My dad, 75 yr old with psp, would turn down lunch outings with friends when he was still mobile. Finally got it out of him that he was embarrassed. He was worried he would have a choking episode around others. He was also embarrassed cause his cognitive ability had declined just enough that he knew he was a little off. He used to be very social, now prefers to be alone🙁Sorry for the journey you are on. It’s a tough one.

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I liked the comment about watching the TV shows over and over. My hubby watches the old westerns like Wyatt Earp and The Lone Ranger. If we are home the TV is on with no exception! I help Gene walk with walker and gait belt or wheel chair but still taking him to exercise in a special Parkinson class even though he has PSP. He sits in a chair and does what he can, also I help him get on and off a Nustep machine. He used to do an hour but now about 20 minutes. His 50 plus days of diarrhea kept us home and weakened him but now we are able to get out but it is quite an effort to do so. The interaction with other people is so important so I keep taking him as long as I can. I now have someone stand guard and take him in the restroom as he needs help. Family restrooms are hard to find in our area. Hugs for all. I already drank all the wine that Gene made years ago! Nancyxxxx

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Hi bingo69, where do you live you are only 7 miles from me?

Helen xx

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Sorry to ear your situation.

I am sending by internal private mail our experiences on PSP-RS that could be useful for you.

Regards.

Luis

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All to familiar. But, keep coming back here for support and affirmation. It has helped me a lot.

In my house, I made sure my husband did his exercise (?!) and found myself slipping with a chronic shoulder injury. Somehow we always find time to be a caregiver. Like stated all over this site (and everywhere else), we are supposed to take care of ourselves. My own reaction had been, "sure, give me a few more hours in the day..." It finally occurred to me to do the simple exercises my husband was doing to keep myself strong. I actually struggled through them initially and now do them everyday before I begin my day. I can't tell you how much it has helped me both physically and mentally.

Somewhere I read a quote from a speech given to a graduatng class from a military academy. It went something like, "Make your bed when you get up. That means you start your day with one success." Sounds so simple and trite. But at some level this has worked for me. (and I've started making my bed too!!)

Take care.

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