PSP speech

[Morag1952]

Husband has psp for about 5 years has no mobility balance very bad frequent falls speech nearly unintelligible I am very frustrated re speech. Have carers three times a day . I am struggling. Also he doesn’t seem to care about anything except sport on tv. He can’t control the buttons on remote

[Bergenser]

Dear Morag1952, thanks for posting. I'm sorry to hear you are struggling; the issues you mention are all too familiar. I think we all want to keep our loved one safe and happy, but it's hard when the communication is missing and the brakes are off on their behaviour. "One-track" behaviour like watching the same TV programmes all the time - it's normal, if he's happy with it there's no harm. Does he get frustrated with the television remote or is that bothering you more (in my case case, I'll fight him for it when I'm fed up of picking it up off the floor or having the sound turned up past the pain point, or finding that he's purchased content / channels neither of us would watch but he kept pressing OK because he couldn't find the "back" button - the list goes on).

Carers three times a day might help but it sounds like you are left with supervising him and trying to avoid falls the rest of the time, and those shifts can get very long. Are you getting any respite or carer support? Our council offered a one-time payment covering a "sitting service" so I can get 4 hours a week out of the house to "pursue outside interests and take part in the community". I use the time for me, and it really helps.

Big hugs 🫂

[Eaton7]

I lost my husband to PSP last year and there are no easy answers for carers. In our case we were provided with a motion sensor in the bedroom and one as a seat pad on his armchair and these meant that I had a reasonable chance of getting to him and guiding him to avoid falls, but of course I still couldn’t be more than one room away from him even then.

He would happily watch the same dvd series over and over and he did love to try to sing to CDs of favourite singers which resulted in a strange sound but was wonderful to see.

He was no good with the remote control either so it was best if he settled to a programme and the control was out of sight. I did get random 2 hour sit ins from the local hospice team which meant that I could get a bit of respite by gardening or just sorting paperwork but I tended to stay around the house as these people were not familiar to him and he might get difficult.

I had two 30 minute care calls a day and I also paid one lovely lady to sit with him for 2 hours care per week as she was marvellous with him and those visits enabled my to get out to a hairdresser, etc.

I hope you are able to find some extra help without cost as it will give you a little bit of time with less stress.

God bless, stay strong.

[LuisRodicioRodicio]

Hi Morag1952!

I think it is important to insist on the observations regarding the main caregiver of Bergenser and Eaton7.

*Releasing the PSP caregiver and allowing him/her to have a life outside the home as well as to avoid strong or continuous physical and psychological efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the person's previous work (before the disease had been shown) must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance and surveillance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.

Remember that the main caregiver jobs and occupations grow along with age and the disease progression. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.

For a caregiver to rest and sleep well is essential. Combat stress, too.

From our experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential, supposed an effective and intense help with trained personnel throughout all the year.

As "Bill F" said: “As we look back on where we are, we have a wonderful support team of medical professionals, fitness trainers, church folks, nonprofit groups, friends/neighbors, paid caregivers, family members. It's absolutely amazing. Start now to build your team. You will need them, and they'll all want to help.”

JEN2017 said: “Nobody could/should go through this hard disease alone. Especially the caregiver”.

Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”. And I would add that the main caregiver is the most appropriate to frequently express affection and accompaniment to the patient without excluding other friends or relatives.

Reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

Hug and luck.

Luis