PSP Association
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My Dad

My dad was diagnosed with PSP in October 2015. We were very lucky that his Neurologist diagnosed it straight away. He had several years of little falls, minor car accidents and slightly slurred speech. My Mum who is 83 has cared for him at home until last May, when it became too much for her. He was becoming demanding, incontinent at night and had to be watched 24/7 even though he had a walker. We placed him into a Nursing Home in May after several falls, where he ended up in hospital. Dad was not happy. He is now on pureed food and can't dress himself or feed himself. He was finally settling in until in December we were told that the Nursing Home was closing. We had to find another home, which we moved to on the 29th December. Dad is now back to where he was in May last year.

It is so sad to see him just sitting in his chair. He dribbles and coughs a lot. The nursing staff are really caring, but he is so angry about being there, I think he makes it difficult for them.

My Mum used to visit him every, but now has cut back to every second or third day. I visit him once a week. I always leave there in tears, because I feel the man I am visiting is not my Dad.

I can only hope that he will not suffer too much with this horrible disease. It is so cruel and unfair.

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I am so sorry for your suffering in watching your father deteriorate as he has. We can only hope and pray that our loved ones will find peace and we find comfort knowing we did the best we could. Its all so frustrating and overwhelming.

I cry a lot these days thinking about everything going on with my dad and how it has affected the entire family.

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Hi Lisa_jane I know how you feel. Mum who is now 79+ was diagnosed with PSP in 2013 after several falls over time. We looked after her till almost a year ago when we had no other choice but to send her to better care in an extended care hospital. It has been a terrifying journey full of heartache and parting with her to leave her to 24/7 fulltime hospital care tore our hearts to pieces. I can only see her 2 to 3 times a month as she is now in a hospital in a city 2.5 hours by flight away. I am glad that my sister is able to see her once every 2 to 3 days. I am comforted knowing that she has nurses and doctors caring for her 24/7 but saddened that I cannot see her more regularly to comfort her.

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Lisa I am so sad that your Dad had to be moved. It upsets me to think he is struggling to settle into another home. As if life is not cruel enough to him? Remember though that inside that body is the Dad you have always loved. He knows what is happening and all that is going on. Sadly he can't join in to chat with you or your Mum as h would have but never forget he can hear all you say. Tell him you love him and make him feel special.

You and your Mum have done well looking after him and it is understandable that things became too much. However nobody will love him as much as you and your Mum do. He needs to know that and to be reminded all the time.

I thought my husband was getting good care but now with the passing of time I realise he wasn't. Towards the end of his life I realised he wasn't getting the care he needed. So in many ways I was glad when he died as it was such a cruel way to live.

You mentioned your Dad dribbling. Has he not been given anything by the doctor for that? It can be stopped. For the life of me I can't recall what my husband had. Help everyone out there! We need a couple of solutions to this and there are three if I am correct? However the eye drops were not prescribed for my husband when he was in hospital. I think they thought I was suggesting something to poison him!

The same with the Care Home they wouldn't even give him the pain killers prescribed for him! When I asked they still didn't give them to him! The patches for dribbling are called...?

Marie x

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Atropine, Botox, Amitryptyline....Go up to the little magnifying glass icon on the upper right of the screen and click. This opens the HealthUnlocked search function; type in dribbling...the historic posts full of great information are then listed.

Good luck Lisa Jane, and deepest sympathy to you: We understand the pain of seeing your loved one deteriorate. It such an unfair and beastly disease. But as Marie says, just give him a hug and tell him you love him. Play some music he likes, or turn on a tv program he likes (on a laptop or iPad if the nursing home only has crap game shows on ..wink..)

Hugs to you XXX

Anne G.

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I feel the same way when I leave my dad in his nursing home. My dad doesn’t like to socialise with the other people in there he’s never been one for that so he’s sat in front of the television all day, falling asleep.

I only manage visiting once a week and feel guilty for this. When I go I give my dad a shave, clip his finger nails and wash his hands, face and teeth.

It is a very sad disease, heartbreaking.

X

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So sorry for the distress you and your mum are going through as this evil disease robs you of the man you both love. Outside he may have changed but inside he is still the same lovely man.

It was a shame the Home closed just as he had settled but hopefully in time he will settle in the new Home. xx

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Thank you everyone for your kind words. It is so comforting to know that there are other people in the same situation, even though we don't know each other we all have the same bond.

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