My 72 y/o husband was diagnosed (after a few years of misdiagnoses, beginning in 2018 with symptoms beginning in 2017 or so) with PSP in 2020/2021. He has it all. Classic. Falls repeatedly. Almost completely immobile. Apathetic. Just lost continence (fecal) but still manages a pee jar most of the time. He's still pretty sound cognitively though (great memory, but not much executive function in terms of being able to think through problems or make future plans). I'm 64 and really starting to feel the wear and tear. I am piecing together some help, but friends keep saying put him in assisted living. Assisted living doesn't seem like a good option, especially for a sane person with PSP, and even if it were, he's so immobile it's not a permanent solution since they won't keep him once he's completely immobile. Nursing homes are too expensive - but that's the least of it. They are gruesome! I can't do that to him. But I'm struggling. I don't want to sound morbid, but I want him here with me, but I also want to survive and to have a life again when he's gone. I can't seem to get a clear idea of where in the PSP process / stages we are. The neurologist has been saying advanced for nearly as long as his diagnosis - 2 +/- years. I hope it doesn't sound terrible, but I feel like I could make it and endure this for him if I knew how much longer I'd need to be doing this for him. If "advanced' is something that can last another two or more years, I don't think I can make it. How can I get some insight? The few times I've tried to ask the docs, they "reassure" me that it can go for years. It feels so overwhelming.
Where are we in this process?: My 72 y/o... - PSP Association
Where are we in this process?
I don’t think anyone knows the answer to what you are looking for. Everyone with PSP has a different walk. I have kept my husband at home for 10 years since the onset of PSP and the last 6 years have been a struggle and frustrating . He has just gone to a nursing home due to my coming operation as that is the best option for him now. Please accept as much help as you can get to have some life of your own, from family and friends also we had carers four times a day to manage his personal care. It’s a hard life but try not to burden yourself with the tomorrows. I have done that and found it more stressful than just coping day by day and accepting PSP as part of our lives. If you want a listening ear, I can speak to you privately and give you my number. I do wish you strength in your journey.
I cried reading this. Thank you for offering that. I would like to talk to you. They say don’t put private numbers on here so I’m unsure how to get yours or send mine. But I hope you know how. I try. It to look ahead but that feels like the only light sometimes.
Re private information .... I swap emails and addresses with a few people, and the sky has not fallen in on me yet! It's for YOUR cyber-security. Maybe put the tel no backwards or pop in an 'm' between each digit?? I like experiments! So mine is 0n1n6n8n4n5n6n7n7n2n1n. Try me? TIMbow
It is very difficult. I could have written this myself as I am at this exact stage and like you want the best for my husband (72) but also want a life for myself(72). But as Kasenda says don't focus on the future, one day at a time is the only way. My thoughts are with you.
Good morning!I am so sorry you must deal with this insidious disease. My husband has been battling this for over 6 years now. Like you, we had 2 years of misdiagnosis before he was finally diagnosed with CBD. The two diseases are very similar and I am told one cannot be completely sure which disease one has except through autopsy. My hubby is completely unable to move any part of his right side and his left side is not great. We use an assist to stand to move him from bed to shower chair to wheel chair. His speech is nearly gone and he has some mild depression. You don’t mention where you live, but we live in the USA. We have daily help through Medicaid. I would definitely have to put him in a nursing home without that help. He requires someone to be with him at all times. If you would like to private message me, please feel free and I will give you more information on some of the things we are doing to help him and me. But I do implore you to love him while you have him. As hard as it is, be patient and kind. He does not want to be in this situation anymore than you want him there. Pray each day for strength and it will be given. Each night be grateful for the day you have had. Look for the joy in each day and you will find it. You are someone’s inspiration and light.
Beautiful and wise words, Indiana-girl, you've expressed. "But I do implore you to love him while you have him. As hard as it is, be patient and kind. He does not want to be in this situation anymore than you want him there. Pray each day for strength and it will be given. Each night, be grateful for the day you have had. Look for the joy in each day and you will find it. You are someone’s inspiration and light."
Tim x
Yes, we are in the USA too. I have decided against Medicaid even though - remarkably, and heartbreakingly- our country offers no other help and full-time private pay is out of our reach. Medicaid (I’m in Georgia) is horrible here and the government is so broken I cannot accept the kind of intrusion it would make - plus, given the quirky way we worked as a couple (I paid for the house and things like school for our daughter while my husband taught- I came from working class folks so I didn’t know much about financial strategies- and now we have to live on his pension and I don’t even qualify for SS yet- anyway, it’s great if Medicaid works for you- but we’re stuck now. The government has “discretion” to claw back pension funds if we put him on Medicaid and there is no way I trust this government to exercise discretion fairly. Sorry for the ramble, just wanted to explain why we’re in this huge gap with lots of folks who don’t/won’t get on Medicaid and can’t afford all the help we need.)
Indiana-girl, I agree with daddyt 😙
As everyone has mentioned there is no one answer to your question. We are in our 7th year my loved one is completely chair bound refuses to lay in bed so we continue to get her up. We have staff from 8:30am to 10:30pm 7 days a week. And it's still hard to get through most days. We bath,dress,feed and get fluids in her. Recently we have had to do her shopping without her as it's just to much to get her in and out of stores. So I understand not wanting to put your husband in a home they are uneducated on this disease world wide. But look at getting help for sure still cheaper then a home. I was told my loved one wouldn't make it to Thanksgiving last year well here we are in July....I've found ahe makea several declines looking like death is near then she bounces back. I found myself burnt out several times and the lead person. Then when hospice gave time frames and she made it past those I would find myself more frustrated then ever because I was using it as a time frame per say of how much longer things would be this way how much longer I had to hang in there. And as mentioned the best approach is day by day I even tell myself she is immortal because of how things are so bad for her I've never seen anyone go downhill so far and to be honest I never want to experience this again. Even though your husband can't make decisions for the long haul you need to. Our loved ones don't process how hard this disease is on everyone not just the person who has it. She tells me all the time it's not that bad and I kindly remind her for her it's not because we literally do everything for you as you can't even hold your own head up. Yes you could have years ahead of you left or days left. Try to get the help you need. Best wishes
I too could be the one writing this, my husband is 72 and I’m 64. He was diagnosed eventually, last year but has had symptoms for over 4 years I would say. I’m surprised as to how much he has changed in the last year. I’m also surprised as to how much I’ve changed too. This PSP is devastating for the individual but the whole family are affected. I don’t feel I am me anymore. My husband is reluctant/lacks insight into what he is able/unable to do. From listening to others it does seem that every case is different, so is difficult to judge how long or where you are in this disease. I never know what the day will bring and what we need to tackle. It is difficult to ask for help and harder if your husband doesn’t see that he or you need it!
I don’t have any magic answers but you are not alone in going through this.
Thinking of you
Thank you. I don’t know either. I can’t believe we don’t have better ways to take care of people with this disease - and to take care of ourselves. I hope you have as good a day as possible. If you’re on the group support chat maybe we’ll connect. I haven’t been on it yet, but think I should try it.
Great to hear you are in BC. My 51yr son is dragon boat racing off Nanaimo, an we get reg updates! I used to live West Van.I was PSP diag 4 yrs ago, and so far progressing slowly. Hate to think if/how my partner will cope in later stages. Have made out 3-4 pages of info on how I have negotiated it. Send me pls ur email if you like, so I can send it to you more clearly that on this site. But no worry if not!
Best wishes ..... nd where are you located?
Thanks so much. We're in USA tho - and I don't think services here equate to what you and my other Canadian friends have available. I wish you all the best. And especially hope your caretaker has a lot of grit.
Yep probably right! As an ex therapist I don't want to get into any chemical drugs and their side effects. There are lots of other ways to help yourself and change ur life, without buying into Big Pharma! And by the way, she's been gritty all her life, and a very loving life of devotion to the divine source. PSP= Please Stay Positive!
I don't think anyone will be able to give you the answer you are looking for. I thought my wife would be with us for at least 6 more months and then one day she started choking on liquids. In a period of days she willed herself to passing. She was adamant as to not having a PEG inserted so that was not an option. I think when the person gets to a certain point they realize that their quality of life is no longer acceptable and they "turn off". Good luck in the journey as it is a tough one.
It is a hard one for sure. Thank you for sharing your story. I’m sorry for your loss - and for all of us going through (or helping a loved one going through) this gruesome process. My husband (and I) have DNRs and specific directions not to use feeding tubes and all the other devices. I can’t imagine extending this excruciating path.
In the US people with neuro disease — that’s us — can access hospice early since we are terminal. They can provide a lot of support. Much earlier.
I'm so sorry for your struggle to come to terms with what is happening to your husband and to yourself. Thank you for honestly expressing your feelings. My husband was diagnosed with CBD in 2018. We are both 76, have been married almost 55 years. This is not how our story was supposed to end. I love the reply from Indiana-girl and I can think of no wiser words for you. My husband is completely dependant on me for ALL aspects of daily living. Yes, I get exhausted, frustrated and sometimes angry. But there are also many moments every day of joy and laughter that we share and I try to focus on these. I want to have no regrets after I lose him. I don't want pity for the situation I'm in. Instead I tell myself to buck up, do the best I can, pray for strength, a joyful spirit, guidance, and wisdom to meet daily challenges. And to always be sensitive to what he's going through.
I'm so thankful for this forum and I hope reading what others are dealing with will be a comfort for you. That being said, I've never heard of a pee jar, but the concept is interesting. It sounds like something to consider for my husband to maybe limit the bazillion times we carefully and slowly walk down the hall to the toilet!
Hugs to you!
Anything can happen. If you feel that you can manage for 2 years, perhaps make that commitment and do your best, and then reassess? That’s what I have done with my mother, who I thought would live 6mos-2 years when she came to live with us. We are coming on 3 years now, with the support of hired caregivers. At the 2 year mark a year ago, I cut my own hours of caregiving in half, (from 50 to 20) and now I feel comfortable continuing. I think she could have another 6 months-2 years. I can commit to one for now. It is good to research the care options locally and have a contingency plan.
Yes DB it's horrible diagnosis to care for. I was diagnosed PSP 4 yrs ago, and at 80 still stay pretty active and able. Only found out last week there are 8 variants of PSP, and its seems early research. No body tells you ....... maybe its cos they dont know! I checked in with UCLH research team yesterday, and she said they reckon I am probably "PSP - Parkinsons", which seems to be a slower developer. Maybe ask your neurologist about this -"Tell me facts, what variant am I, etc? (please without a pat on the head) .... and you re doing very well". So patronising! If you are dealing with a quicker developer, with likely time horizon of only a year or three, you may be able to cope better with it? "It's a bugger", as my over-80 parents used to say. Best wishes, a hug, and my support. TIMbowPSP
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