I feel like I’m failing my husband, after reading the post on here. I had my lo in a exercise class but saw no improvement so he stopped. He sleeps from 8/9 pm till 1/3 pm. He is on hospice care and I come home at lunch to get him up and ready for the day. We have lunch and I get him settled in the living room. I’ve tried getting him to do puzzles or word find books. He doesn’t do them anymore. He can hardly write anymore. We do play rummy 2-3 times a week. He loves having the family over. He sometimes has a hard time following a conversation.
Nurse comes on Fridays and she agrees that he is progressing. He hardly talks and when he does he speak very softly.
I still work full time and a part time job is Saturday from 8-12. I just want my husband back.
He goes to bed around 8-9 but it takes him hours to get to sleep. I have been noticing that Rick has started getting up out of bed 1 or 2 times a night to go to the bathroom.
Talk to his doctor about his sleep pattern also bring up his need to use the bathroom multiple times during the night. There are things that can be done.
You are doing what you can and it can’t be easy if you are still working. I was fortunate that I could give up work soon after diagnosis. It’s good you can still play cards together. My husband loved card games and 3 friends would come and play bridge with him every week until it wasn’t possible. They were very patient and played a long while after he should have given up. I bought large playing cards when he found it difficult to read the numbers. Can you take him out? I see on an earlier post your doctor said he may be bedridden in a year. With correct equipment my husband was able to go out several times a week until 3 weeks before he died, 6 years after diagnosis. He couldn’t stand or walk but was only bedridden while I was awaiting a hoist. Some don’t want to go out but we had great times and made many happy memories visiting other places. Keep talking to him even when he no longer speaks at all as he will know exactly what’s going on. I’ve said this before but when I asked C why he didn’t answer me, several minutes later he Said , “I did in my head”. Encourage visitors in, family and friends. Even when he can’t communicate at all it will make his day more interesting listening to conversations but include him if he can communicate with thumbs up/down. I used to invite folk round for takeaways. Someone would bring it in or we would have a delivery and share the cost. C could eat it to start with but still enjoyed the company when he couldn’t and do his funny little laugh during conversations. Many times we had to leave our guests while I sorted C out in the bathroom but they just carried on chatting until we got back. You may be surprised as I was when he appeared to be asleep and I’d say something to a friend like, “We had a great day yesterday didn’t we Colin”, and his thumb would go up, or down in response to other questions. C hated exercises so I didn’t make him do them, just kept him walking as long as possible.
Do what you are doing. You are doing OK. It’s hard and won’t get easier but take every day as it comes and try to make happy memories.
Thanks and Rick is still able to go out, I have a wheel chair in the car and he walks a little.
Hi Penny... Sounds to me that you are doing your best for your hubby. Unfortunately we cannot do everything perfectly... we are only mere mortals. Keep up the good work & hold your head high... You are PSP Warrior Woman. Sending hugs of support & encouragement... Granni B
in reply to
Thanks hope you have a good day.
You are doing the job of two or three people being a care giver and working six days a week.
It is sad to see the person you love slowly fade away.
Good Morning Penny. I first wanted to say thank you for the condolences on the passing of my mother. We are in Glen Burnie, so not far away.
Unfortunately your husband's progression sound very similar to my mother in the latter stages of her disease, both physically and with cognitive issues. I was fortunate in that I was able to work from home several days a week and only need to use FMLA time recently. I can only imagine how hard it is for you be the primary caregiver to you husband AND keep up your work schedule. You have both my admiration and blessings, and you certainly are not failing your husband in any way. Every caregiving situation have unique challenges, and your sounds particularly so.
It sounds like your husband is get out to the car and is still able to walk with the help of a walker. My mother's movement disorder specialist recommended a "U-Step walker." She was able to use the U-step for many months after she was unable to navigate a standard walker. It uses a "reverse braking system" so it will only move when the brake is depressed and has a u-shaped frame. Are you familiar with those?
Penny...I was a bit skeptical at first that my Mom would a) want to use it and b) would be able to get used it. She was still fairly early in her disease when we ordered it for her and she adapted very well. She said many times how much safer she felt using the U-step. It has much less of a tendency to tip over if leaned on by the user than a standard walker. We were ultimately able to get about half of the cost reimbursed by Medicare.
Is your husband still able to understand verbal instructions? If so, he may be able to adapt easily. If that is something you/your hospice nurse think may help your husband's mobility, let me know. It would be good if someone else stricken with PSP could make use of it and since you are local, something can be easily arranged. Let me know what you think!
I looked them up and would love for him to get one, they are expensive. Are you selling your mom’s if so let me know and I will see if I can get it. Thank you for telling me about it.
Penny...although it's not my business to inquire about your financial situation, I can only assume you are not independently wealthy as you noted you are still working full-time and then some. I would be willing to donate Mom's U-step if it can help another with PSP to make things a little easier. We have the standard U-Step 2 without the laser guide, as it is useless to PSP sufferers due to the issues with their downward gaze.
Do you if there is a way to take this conversation private, or I think we can use the Chat feature (I haven't used it yet on the site)? I can just give you my email/contact info and we can make arrangements from there. Would you be able to arrange pickup in Glen Burnie? It folds totally flat and is very easy to transport even in a smaller car.
Penny; if you wish in lieu of payment, you can simply make a donation to curepsp.org in honor of my Mom. How do you think is the best way to share our info? I would be OK providing my office number since it's public knowledge anyway and you can contact me directly. I don't see a way to chat privately within the site unless I am not seeing that option.
I am so glad to see the two of you have worked out the transfer of your husband’s UStep walker. My husband used one also up until his death in 2017. It was taking up room in my spare bedroom closet until recently when I realized the need that someone else had for it and donated it . It was good to see it put to use by someone. Blessings,Janet
I am convinced the U-Step gave her probably 8 months of mobility around the house that she would not have had otherwise. She never adapted to a regular walker and commented that she felt much safer using the U-Step.
Penny ...my husband has three different walkers and the U-step is the only one he uses....he has never had a fall with it...it easy to use and much safer...it’s worth the investment and Medicare paid for it except for a small copay...
Penny all comments this is amazing help I been looking after my uncle now for nearly two yrs I was on my own for little while and found it so hard with also two dogs but we have carers and family to help sadly we never found out my uncle had Psp until 4 wks ago so he was diagnosed with Parkinson it's hard and I have learned to be very patient I feel really bad cause i thought my uncle chose not to speak or go anywhere but now getting a better understanding and writing notes daily all helps thank you all for ya amazing information and strengths one thing I am having problems with is my uncle eating sometimes he wishes not to eat and I do think he finds it hard to swallow an it's getting worst I tried just soups and hot drinks lately can any one advise on what we can do to help them with eating and swallowing..
Eventually the ability to eat and swallow goes away. Some people opt to have a feeding port put into their stomach. It’s called a PEG. Have you talked to your uncle about what he wants for care. How much does he want to do in trying to live with PSP?
A speech therapist might help with swallowing problems. A swallow test would probably be recommended. He would be x-rayed while sallowing solids to see what was happening in his throat.
You know your loved one best. If exercise class wasn’t helping and you stopped, then pat yourself on the back for trying. You won’t look back and wonder “if only I had taken him to exercise”. You aren’t failing! I found that voice therapy wasn’t helping my husband and I stopped taking him. It was harder just to get him in the car for the journey to get there and back. He wasn’t enjoying the sessions. I know that I tried and that was enough.
I was also working full time and I was a total mess the entire time, worried about hubby while trying to work was no fun at all. I looked into daycare for him but I wasn’t earning enough money to be able to take him and still pay our bills. Eventually, I reluctantly took early retirement not knowing how I was going to make ends meet. I still don’t really know LOL, but we’re hanging in there. I just couldn’t juggle a career and continue watching my husband deteriorate. I made the decision to quit thinking he only had a couple of months left to live.
I’m glad that you have hospice to help you and it’s nice that you can see him at lunch. My commute to work was too far away for me to be able to do that. If that had been possible I would probably still be working. Most of the time my husband doesn’t know if I’m even in the same room with him. If I run out for a quick errand to the store when I return, he’ll ask me if I’m still going to go. He never knew I left even after having kissed him goodbye and telling him that I would be right back.
Hubby reached the point where he couldn’t bend at the waste to get out of bed. When he walked, he also shuffled and dragged one foot behind, plus he couldn’t swing his right arm at all. His balance was off and he had trouble using a walker. By trouble, I mean that his brain couldn’t process how to use the walker and so he tried to drag the walker behind him. Again, I feel like... well... we tried the walker and that didn’t work... what’s next? I never felt like a failure so please don’t beat yourself up. Only you know what works and what doesn’t. Like you, I want my husband back. This is such a cruel and heart wrenching disease. We all do the best that we can with the cards we’re dealt and all we can do is put one foot in front of the other.
Dearest Penny. You are not failing. Everyone who has this horrible illness is different and everyone's progress is different so don't compare what your husband does or does not do with others, just make sure that he knows that you love him. That is by far the most important thing. My husband loved having the family over too and seemed to be more alert when the younger ones were around. Good luck and big hug AliBee xx
My mum tells my children she is smiling on the inside at them even if it doesn't always show. Like NannaB sometimes she tells me that she's asked me something inside her head as her speech is getting slower and she's concentrating on getting the words out. She loves conversation around her even if she can't fully join in.
If the exercise classes aren't working don't feel bad about it. You have tried! Just remember that everyone reacts differently to PSP and whilst they might work for some they won't for others. You certainly aren't failing. Deep breath, onwards and upwards!
You are doing all you are able and more by the sounds of things. I encouraged Ben to exercise when he was able to use a walker but gave up when he found it too difficult and he hated doing it. I more or less did the things he wanted to do and gave him all sorts of terrible food if it took his fancy, I felt his life was difficult enough and there were very few pleasures in life so make it as enjoyable as i possibly could. Ben never wanted to go out, he said 'What's the point!' I tried to encourage him but the answer was always No and so I only took him out when it was absolutely necessary. Instead I would throw the doors open when weather permitted and he would lay back in his chair and listen to the radio. I did have friends round for coffee and a chat and he would listen and I know he enjoyed the chit chat. As I say simple pleasures are what seemed to please him.
Penny, you are not failing, the progressive disease is winning. I know it’s frustrating and you want to do everything possible for your husband. I have moments when I berate myself for not being perfect, but I remind myself that I am doing my best in a difficult situation. Keep your head up!
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