Want to know how you all cope with your PSP journey.. My husband has had PSP for 5 years. But only got the diagnosed 3 years ago. Now can’t talk, walk & finding it very hard with eating.. Doing my very best to keep him happy & taking him out but isn’t it hard & worry how long I can keep going. He is 76 & I’m 72. Have carers every morning to get him up showered & dressed which is a great help.
He tells me he does not want to keep going any more which is heart breaking. HELP
increasing help from others, resthomes, respite facilities, mobility equipment can all be part of the solution. Ultimately though, I do believe you get to a point where a resthome is the option if you have a limited budget. My dad is in a resthom now often comments that he wants death to come. He is the same age as your husband.
it’s so hard to see your loved one suffer with this terrible disease, especially when they are fully aware of what’s going on and what’s to come. My dad was finally diagnosed last year at 87 and until he was 85 he was going to the gym 3 times a week. His deterioration was quite rapid last year to the point my 85yr old mum was really struggling at home even with additional help. He’s now in a lovely nursing home getting the best care for him, although it was a very tough collective decision to make.
You need as much help as you can get through social services, which take ages to arrange- start making requests for stair lifts, wet room conversions etc if you are able to accommodate these in your own home. The occupational therapist put these requests in for us. Also we had carers at night too which was a great help and at lunchtime to take my dad out for 30mins just to give my mum a break. Also the local hospice maybe able to offer support to both of you too. I know ours has been very helpful with counselling and support. Good luck and know you’re not alone going through this.
It's such an unbelievably testing journey for everyone involved, isn't it? My hubby was also in the depths of despair after his diagnosis and when his body started to fail. At one point, he confessed to contemplating suicide, which shocked me, but also made me so terribly sad for him because I understood why he would even think that way.
For us, a turning point was when I realised that he was terrified of the burden that he thought he would become, and that I might put him in a care home and abandon him. This was driven by some family history on his side. We had a long chat one night where I promised him that I would keep him at home with me for as long as possible and that I would only consider an alternative if it became unsafe for him or me to keep him at home. He really settled down after that and seemed to become much calmer and happier.
We kept hubby at home until he passed. I was fortunate that my Mom was living with us at the time and she did day shift while I worked, and I did night shift. We only got a carer in right at the end, and only for about a month or so.
It's really important to try and get support so you can carve out little bits of time for yourself, otherwise the constant strain can do you in. The exhaustion (physical, emotional) can also really take it's toll and make every single little thing seem like a mountain. This is an ultra-marathon, not a sprint, and you have to figure out ways to keep going. For me, it was having long chats with my sisters and my cousin (a Doctor) so I could vent. I would also sometimes just take a few hours out and go walk on my own. We found a wonderful palliative care specialist who was such a great support for both my husband and I over the last 2 years or so.
Keep reaching out to the wonderful people on this forum who will give you good advice, but more importantly just understand what you are going through. You are doing the very best that you can. Hang in there!
Thank you so much for your lovely words. What a journey this is for every one dealing with this unforgiving disease. Will sit & talk to him about why he is so down, may be he thinks the same as your husband did. Hope to be able to keep him at home with lots of help. Lovely to know there are people out there that understand . Thank you. Take care xxx
Hi Sawa!
Thank you very much for sharing your experiences. Sensible, constructive and practical.
Self-care for caregivers is essential.
You did a great job. Throw away the bad thoughts that you could have done better.
A big hug.
Luis
Hi Joy 204010!
*Symptom control: Most people only take medication for symptom control.
• Control of palliative medication against depression, as well insomnia and anxiety.
In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case.
(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.
Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.
A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.
Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.
In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:
healthunlocked.com/psp/post...
Kevin_1:
healthunlocked.com/psp/post...
Article in Karger Medical (Neurological Improvement with Medical Cannabis in a Progressive Supranuclear Palsy Patient: Severe impairment of motor and language functions_A Case Report) :
karger.com/Article/FullText...
Hug, luck and courage.
Luis
Joy,
I lost my wife to this cruel disease 5 years ago. She was 59 at the time. Her health declined over a 8-9 year period before her passing. She was originally diagnosed with early onset Alzheimer’s, but her symptoms were not classic Alzheimers. We saw a specialist who corrected that diagnosis to CBD, the sister disease to PSP. This was about 9 months before her passing. This cruel disease robbed her of the things that brought her the most joy in life(running, speaking, holding her grandchildren, caring for herself, etc). She also reached a point of extreme anxiety loss of desire to go on.
It was not until after the correct diagnosis that I found this forum and was blessed by meeting (online) others traveling this same journey that encouraged me and made me realize that I/we were not alone.
My only advice is to cherish each moment you have with your husband, despite the difficult circumstances. I miss my wife terribly and even though there were difficult times, it was time that I was able to spend with her.
I also have my faith that brought me and brings me joy through these difficult time that I struggle to explain.
You are not alone. There are others in the forum and I that care for you because of the connection in this cruel disease.
Bobby
Have only just found this forum & always wished I could find people that would understand. Lots of people don’t. So sorry you lost your wife & at such a young age. Always thought only older people got it . There has been times when I have wishes he would just go to sleep & not wake up. They are the days when he can’t move his legs at all or he cry’s & I can only see sadness in his face . I try to get him out, we go to a keep fit class 3 times a week which he enjoys, can’t do a lot but they are full of encouragement when he just lifts an arm or a leg just a little bit. Thank you for your reply it has really helped knowing I am not alone. Take care & be kind to your self. Sounds like you did a wonderful job taking care of your lovely wife. Joy
204010, this is a very difficult time for you I know as i have been through it; as you are in the UK if you haven't already done so I would advise phoning the PSP Associastion helpline and register with them. There may well be a support group near you to give you closer support. These are on Zoom and a few are physical meetings, not always easy to attend as I found, but on Zoom you are meeting like minds and talking to them can be a great release.
Patient here. I’m concerned this reply may make others feel sad or angry but it’s my truth and I only ask that although members here may not agree with me that they don’t say my input is without worth.
I completely understand your husband’s feelings. I have recently entered a stage where my hands feel like clumsy paddles instead of individual fingers. I’ve suddenly lost much of my ability to lock doors, raise windows, switch lights on and off. I drop my spoons and forks often. My legs are locked up. People don’t understand me when I talk. I’m constantly evaluating whether I’m safe in the moment.
I was going along reasonably well for a couple months then this hit all at once. I’m a single female, 66yrs old, a mother, a sister, a daughter. I would never have imagined this for myself, but here it is.
It’ll get much worse.
I’ve always said there are things I won’t accept with this disease. A feeding tube. Loss of my voice. Puréed foods. Needing someone else to help with toileting. Wailing.
I switched to uniformly chopped meats this week and I asked someone last night “What am I eating, what is this meat?” Turns out it was veal. It tasted like breading.
I still don’t plan on accepting those things I mentioned above. I feel strongly that attitude leaves me with about six months before I get sepsis or pneumonia, which are both simple ways to go. If neither of them get me I will simply stop eating and drinking. My doctors are not arguing against this. A lot of people who find no value in their life choose this.
You may disagree heartily with my phrase “no value in their life” but it’s unimaginable that I go on like this, getting worse, so others can have more time with me. What is the value of them having more time when I am essentially present in my head but can’t communicate, eat, walk, hold a pencil, do any of the hobbies I used to love or even pee on my own?
Im at this crossroads and am not happy that I’ll cause pain for those left behind. I’m not abandoning those I love. No one looks forward to feeling like this. But this the reality I face.
I’m at peace with this. I’ll be able to wriggle my fingers, sing on tune and at the right speed, bake, walk in the woods listening to the fall leaves riding the air to the ground, and so many more things I miss so much (driving fast on curves!). I believe there is more than just this life and moving on will bring back joys that I’ve missed for years.
Everyone deserves to be heard in regards to this. There are only increasingly difficult choices ahead. I’ve been honest and open with my loved ones and we have talked it through. Not all of them agree. I never expected they would. I recently sent my relatives the items I would hope they received after my death… in time to enjoy the gifts together. To talk about the history of each heirloom.
We are enjoying the time we have every day. We laugh. We cry. We value what we have knowing it’s temporary.
Everyone’s life is temporary. The vast majority are simply not forced to see it coming at them.
All of us on here value life, love and simple pleasures. Each of us will find our path forward through this horrible time in their own way. You will find your way together, you and your husband. I wish you peace.
With love,
Kyle
What a courageous and honest response Kyle. My husband died with PSP. He felt exactly as you do and I understood completely - as did our children. He stopped eating. He was at end of life on palliative care. He had had enough. It was hard not to intervene and just allow him to take control when he felt it was right. But we told him we loved him and let him go.
Good luck with your brave struggle - and a hug from Jean xx
thank you
what an amazing lady you are. Totally get that you don’t want to carry with this rotten illness.. Have thought many time when your quality of life is no longer there & we all know things will only get worse, what is the point of carrying on. Have said to friends wish I could put a pillow over my husband’s face. Of course would never do this I love him to much. They do look at me a bit strange as if I may mean it, We only get one life & all want to Live it with dignity & feel this PSP takes all that away. Enjoy what ever you can no matter how small. Take care Joy
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