Is fatigue a major issue for your PSP patient?

I'm finding more and more that fatigue is a major, major issue with my wife who has PSP. We had tickets to a concert at 2pm today. That is normally her nap time. I had no issue getting her into the car using our usual routine. She can push up and straighten her legs while I assist pulling her arms. No issue arriving at the concert hall. Leaving the concert she couldn't help by using her legs and I barely managed to get her in the car. On arriving home she was no help at all and again I barely managed together her from car to wheelchair. I managed to get her into her chair in the house but barely. At bed time getting her from lift chair to wheelchair she almost slid to the floor. She was not able to give any assist with her legs. I'm finding that fatigue and no nap or a busy day take their toll on her abilities. Anyone else have this issue? Her normal sleep pattern is bed at 9:30 up about 10:00 nap 1:30 to 4:00. Any change or less time makes both our lives awful. Please post your thoughts or advice.

Jimbo

Last edited by

23 Replies

oldestnewest
  • Hi Jimbo

    I've always thought your wife's PSP's status mirrors my wife's in many ways. Fatigue is a major issue, and becoming more so as the weeks go by. I have a strict routine for her , otherwise I know she would stay in bed much longer in the morning. She's usually in bed for 9:30pm but I get her out of bed about 7am for toileting, cup of tea, wash and breakfast by 8am. All activities are kept to mornings and she sleeps in the afternoon before an early evening shower.

    If she has any activity that involves "going out" she is absolutely shattered afterwards. Like you, she is far more difficult to get back in the car after she's been out. In fact, her sisters and older friends will no longer attempt getting her in and out of a car.

    I'm beginning to think that her fatigue is moving towards the stage where she will not want to do anything. For the last two weeks she's been too tired even to go to church (which is always a bit of a struggle anyway), and this is unsual because she is always insistent about going!

    At the moment her limbs still seem strong, but she cannot sit for long periods if her neck is not supported (her head drops onto her chest and she has considerable pain in her neck).

    As her carer, I am seeing many subtle changes as the disease progresses (despite last year being reasonably plateaued).

    I'd love to give you some good advice, but I have very little. I do believe in keeping my wife active as much as possible (without being too demanding of her), even if this continues to place more strain on our daily living. I try to balance what is good for her (healthwise, physically and emotionally) and what is no longer appropriate at her disease stage. I talk to our physiotherapist and speech/swallowing therapist and nurse when making such decisions.

    Perhaps it's time for you to reconsider your trips out. It may mean foregoing them all together for both your sakes, or consider taking another person to assist with the car transfers, and settling your wife safely when arriving home (knowing she is likely to have similar problems as you descibed). Sadly, if we care 24/7 for our loved one, then continual adjustment to our lifestyle will have to take place. My wife used to love gardening, now she can only look at the garden, and she even finds it impossible to see it from her indoor recliner chair because she cannot turn her neck to view it.

    Sorry for rambling on, but I do wish you all the best in confronting your wife's PSP progression.

    Take care.

    T.

  • Strelly, yes, our situations are very similar. We had to stop church due to fatigue. She always loved church and I was an usher for many years. Now we watch on TV (they stream our services). Yes we are adopting as time passes. I also thought last year was a plateau but PSP time marches on. Are you using a lift yet? Can your wife still walk? Is using the toilet an issue? I always thought myself a patient man but PSP takes that from me at difficult moments these days. A very few times I've reacted to situations a bit out of character which I hate with all my heart. Thanks for your support and advice.

    Jimbo

  • Hi Jimbo

    Sorry for the delay in answering.

    6 months ago I was basically helping my wife to do transfers only (not walking) using a zimmer frame, because I felt she was only shuffling a few steps before having freezing gait, and I was afraid she would fall. However, with the help of a very positive physiotherapist trained in neuro patients (like Parkinsons'), we now manage to walk my wife (with frame and fully assisted) the length of our small home once a day. Admittedly, my wife is worn out when she travels this short distance. The Physio uses "cueing" and counts 1 and 2 as my wife walks. I'm happy with my wife's ability to do this, but recently even this task is becoming more noticably difficult for her.

    So we're not using a "lift" or "hoist" yet! It may well be necessary in the future.

    I don't find using the toilet a big issue yet. My wife wears a type of adult diaper (to use the USA term), because she has severe stress incontinence (coughing or laughing causes her bladder to empty). It's the type of diaper you can "tear" both sides and remove without pulling them down over the legs/feet. Helping her "walk backwards" towards the raised toilet seat (with side bars) can be difficult, because I always sense she's swaying backwards ready to fall!

    We do have a commode shower chair, and I help our daily carer (who comes in for 45 minutes) to sit her on this chair. The hole in the chair means the carer can wash her bottom end.

    It appears your patience is often "tried", but even a saint would be "tested" if they were a full time carer to a PSP sufferer. I'm no saint, and I struggle with my reactions to my wife in some situations, and feel so guilty afterwards. Do you get any respite? I do have about 5 hours a week when a carer comes in to look after my wife (apart from a couple of hours when a relative visits). I have not had any long respite since caring 24/7 for my wife, but have just booked a respite week for her in a nursing home. I don't know yet if this will work because I may still "worry too much" about her (especially since I've made a decision NOT to visit her during this respite week).

    Take care

    T.

  • Strelly, it is so encouraging to hear you have similar issues on keeping patient with your wife. I have a sitter come in once a week. On that day I have an art class in the morning then do my errands after that. I pay for the sitter. Hospice can provide one but their sitters don't help patients with hygiene so that wouldn't work well. If toilet cleanup were required I don't think Hospice sitters will do it. Perhaps someone can correct me if I'm wrong. We are in USA. Haven't thought about a week respite at this point. The thought of being apart for a week isn't pleasing to me, at this time. May get there later.

    Jimbo

  • Jimbo, yes these are very real problems, I looked into getting a car hoist as we need 4wd where we live but cost was too much so my husband has not been anywhere except by 4wd ambulance for the last 7 months. I would be looking at secondhand cars with wheelchair ramps already in, seem to be lots around on the net at good prices, but not 4wd. We do have an all terrain chair which allowed us to go into our gardens but sadly he is too unstable to use it now, so I take photos and put them onto the computer so he can look at them. Our daughter also filmed a video of our rainforest track and he watches that at least once a week. Good luck. Suzy nth qld

  • hi again jimbo sounds like your wife is at the same stage as my husband ,I can`t get him into the car his legs are so stiff now ,its like trying to bend a log , he likes to go out in the car ,I have just this week asked for more home help i think we are entitled to around eight hundred a week ,we have been using less than half ,so you should be able to get the funding as well .good luck jimbo .Christine .Ballarat vic

  • Thanks Christine. With my wife it is more getting the legs to do what she wants them to do. They just don't cooperate. Not due to stiffness, she doesn't have that yet. Jimbo

  • Hi Jimbo & Tony

    When it became unsafe to transfer Mum from her wheelchair into my car, I started using disabled taxi's. the wheelchair is pushed up a ramp or some have electric lifts. The wheelchair is secured to taxi floor and seatbelt on !! Very safe and still enables small trips out or hospital appointments etc.

    Hope this helps

    Sending love and hugs to you both.

    Jo xxx

  • JoJo, thanks for the tip. Jimbo

  • Hello Jo

    Lovely to hear from you.

    Thanks for this advice. I may have to use such methods when car transfers become impossible.

    I do have a "swivel disc" where I help my wife stand from her wheelchair onto the disc, and I swivel her around to back onto the car seat. Then I lower her down onto the seat, that has a plastic cover, and I can turn her on the plastic to position her in the seat. This method works on most occasions, but if my wife becomes "nervous" on the swivel disc, the whole process has to be aborted!! Sometimes she just laughs while I'm standing her on the disc, and then she wees into her incontence pants, so we may have to go back indoors again to change them......all part of the "service" !!!

    Take care

    T.

  • Strelly, ah the things we do for love!!

  • hi jim hows it going well mate about this fatigue sometimes not all of the time I have trouble lifting my body out of a chair and to put my shoes on or clothes I feel exhausted just little things but it makes me very fatigued but as I say its not all of the time \

    some days are better than others at the moment my problem is falling over seem to have had rather a lot this year but not to worry it will sort itself out one way or the other best wishes to shareen from down under mate tell her to never give in peter jones queensland Australia psp sufferer

  • Peter, thanks for the post. After a full night of rest Sharyn was much easier to work with today. Able to help with her legs, thank God. Jimbo

  • Hi Jim, I just found a section on the PSP Association website which may help. In the Personal Guide their is a section on symptoms which includes a couple of pages on fatigue and sleep. its in Section 1, on pages 13-15, and can be found at pspassociation.org.uk/getti...

    Hope this helps

    EB2000

  • Thanks, good information. I forgot about all they offer. Jimbo

  • Hi Jimbo - this question has brought back many memories ...

    Tony did get tired very easily, and we reckoned morning was the only good time to do anything stressful.

    Also, he was taken for his respite day in the wheelchair by disabled taxi - and in fact we did hire it privately once when we needed to go somewhere. Quite often, another chap in a wheelchair was picked up from a village, also to go to the same town, but a different care home, which was company for them both.

    In the 1960s when my Mother had to use a wheelchair she was very conscious of being "different" - at least now it's a way of life for so many more people in public..

    Mo

  • Mo, you encourage me! When I see posts of what others have done in situations and survived it gives me confidence. Jimbo xox

  • That was a cry from the heart, Jimbo - you're doing a grand job.

    Mo

  • Mo, thanks I needed a lift today. Most days I'm fine but today I needed some encouragement. Jimbo

  • Good morning, my mom experiences the same. Mornings are rough because it takes her a while to "wake up"' the she naps in the late afternoon before their 5:30 dinner. At Christmas dinner at my house she could barely get in the car. It took 3 of us to help her in. Her legs are very straight and stiff. I liken it to fitting a 2"x4" x 6' board into the front seat of the car. She just lays straight out. Very little muscle and no strength. She also has osteoporosis so she has low bone density (hence the two broken hips in 2013. Hope this helps for you to know we are all struggling with the same/similar issues.

  • I placed a plastic bag on the seat for her to sit down (backwards) on then turn her in. Seems to work at the moment. Next week will be tough. Her best friend from NJ is coming for a week. Two of the days I'll get a sitter for Sharyn while we do Disney things. Sharyn can only do on day out then needs a day or perhaps two to get back to "normal".

    Jimbo

  • Definitely. Dad only spent approx 10 hours out of 24 awake. Woke up at 8.30am, lunch and nap at 12pm till 2pm, dinner at 6.30pm and bed at 8pm, sleeping (when he wasn't restless!) right through to the morning. Any change to routine-early morning hospital appointments, late nights when friends/family visit etc messed up dads routine and he would get so fatigued the next day it would hit him hard.

  • Dear Jimbo

    First of all I am taking this opportunity to thank you for your wonderful posts. They have been a great support top me as a carer of my partner, Liz, who has PSP.

    For her, one year in, fatigue and muscle weakness are her major symptoms

    Best

    Kevin

You may also like...