Hi! My husband is 68 years old. He was officially diagnosed with PSP IN 2020 , but has been showing symptoms since 2015. He is barely walking now. He falls very frequently. He is on a rollater or he could not get around at all. Everything is so hard for him to do. He has not driven in 3 or 4 years. He cannot judge distance or determine when to stop or go. He has started getting choked constantly now on food and drink. He passed the barium swallow test beautifully, but at home it’s a different story. He has not started losing any weight yet. He also has PBA. THE LAUGHING CRYING . So he is on Neudexta also. It does help. But not completely. His memory is bad. He used to sing and play guitar in church. He cannot carry a tune now. And can’t play his guitar either. He stays worn out constantly and sleeps a lot during the day. He was very active and now can barely walk. He gets really upset because he cannot do the things he’s always done. He was a coal miner for 30 years. Which is very hard work. Now he cannot even lift a hammer. Can someone reading this understand and is going through this same thing also? I am exhausted most days. I’m afraid I’m getting burn out. And it scares me. I find myself getting mad at him and I know he can’t help it. He has always been very independent, I never waited on him hand and foot. Now I am it, for everything. I’m just tired. I wake up with a dread for the day ahead. Most days I want to cover my head and pretend life is normal again. I don’t even want to get up. There are so many little things you don’t think of until you have to help your loved one with everything they do. Just needing someone that understands and knows where I’m coming from. I feel guilty to even talk about it, I know he would do this for me too. We had a very loving relationship, now I live with a stranger.
Husband progressing quickly : Hi! My husband... - PSP Association
Husband progressing quickly
Laurel I understand how you feel. My husband is 63 diagnosed last year but symptoms for a couple of years previously. He isn't as advanced but is already a very different person and like you I am now a carer and don't feel like a wife and getting angry seems to be the norm - understandable as this isn't what you thought your life would be. Mornings are hard, facing another day when you just want to bury your head in the duvet and wish it all away. Lots of people more experienced in this than me on here will offer great advice and lots of practical caring help but I just wanted to add a little understanding- its hard but try and think of a nice thing to do each day for yourself - call a friend for a chat, sit with a coffee, have yourself a facial at home, find a hobby you can pick up for a minute, sit and dream a little. Do a little something that takes you away and re energises you if only for a minute. You are not alone I and many others are with you ❤
Thank you so much for your reply. It helps to know you are not alone. Any input helps so much! You feel an immediate connection.
Yes, my dear, your story is so similar to what I experienced with my husband.. he too sang and played guitar. Many days I would wake up thinking of a quote from the movie “Iron Will”.. what fool will start the day and then I would say to myself that is you.. get up and get started. You must find a way to turn yourself off for a while I would lay down every afternoon for 2 hours even if all I did was read or play a game on my phone.. just to turn off my brain from it for a while.. being physically tired is one thing but this disease makes a caregiver.. brain tired, mentally tired and emotionally tired. It is so difficult.
I also had the option to send hubs to respite care for 5 days a month to a hospice care facility. I didn’t send him at first but a good friend told me you need to send him while he is feeling good so it won’t be as stressful for him and you if he has to go in later. Everything will be familiar and not strange so I started sending him every time I could.. He enjoyed being in a different place and with different people. Being home bound can be boring.. changed it up for him.
Try and do something you enjoy every day even if it is just for a little while to give yourself a break.
Thank you for your response. It helps so much! ♥️
Hugs to you … it’s so hard but you’re essentially grieving a little more each day while still having to do the practical stuff and stay upbeat. Get as much practical help as you can… and enough people around you who will just listen x
Thank you. It is hard. I have very little outside help. I’m trying to not worry about the things I can’t take care of. Like all the outside yard work. I have wore myself out with being everything. I have to realize I’m only one person.
True
It is really hard to be a caregiver. I know it is hard to forgive yourself after getting worked up trying to help but it can be very exhausting. Just know, as I'm sure you already do, that he would not want this to happen. I say that as my mom unfortunately just passed away recently from Corticobasal Degeneration (quite similar to PSP) and it was very hard to be patient all the time. Ultimately I would try and think that she did not want this either and that any thing I can do to make her life a little better means a lot to her. After having lost her my dad and brother have expressed a bit of regret at how they acted, but honestly you have to forgive yourself as it is a very hard thing to do.
If you have not looked into Hospice Care I would encourage you to check that out. I wish we had started it sooner but they were extremely helpful for making appointments, getting medicine etc. They would have a nurse out to fill a prescription and someone would come and drive it out to us. At least where I am you can remain in Hospice for a year or more (pretty sure the nurse mentioned someone had been in for 2 years) so it may not be a super time crunch thing. Maybe it is something you start in a few months or a year but I would encourage you to push your providers to see if you can qualify and how long it can last.
And I agree try and take care of yourself and just know it is OK to get upset. If you do try and communicate with him if you feel you did. I think that can really mend it if you feel you did get snappy or anything. It is hard for those affected by it I feel like direct communication and trying to really have those heart to hearts make them and you feel better.
Thank You! For your comments. Every input helps so much!
Hi MikeCaregiver!In my town hall I have attended a psychological support course for caregivers of long-term illnesses.
I remember that the feeling of guilt of the caregivers was raised during the illness and after the illness the patient died.
The feeling of guilt in caregivers is very common and even "normal". The caregivers and the family do what they can in an unknown situation for which they have NOT been trained and under a situation of great stress. On the other hand, situations are being judged with information and experience that has been acquired later.
The solution is to "turn the page", what was done was done with the best will in those circumstances and "full stop".
Hug.
Luis
Very true! I think that is a very good point, it is a very unknown situation all of us get thrown into. I think that will help to put it in terms that are understandable.
Hi Laurel1995!
I'm sorry PSP has entered your family.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
I am not a phisicyan.
During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family and if the notes-document with our experiences and our informations are of your interest, do not hesitate to let me know to send it by the private mail of this chat.
I allow myself to advance some reflections on the role and circumstances of the main caregiver that come from those notes- document that I have mentioned.
Hug and luck.
Luis
Hi again!These are the notes related with the main caregiver from my notes-document:
*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.
Rest and sleep well is essential. Combat stress, too.
On the first years of the disease, the patient resists losing their autonomy trying movements and exercises that are increasingly difficult and logically increase the risk of falls and damage. The patient often discharges his/her frustration and complaints about the primary caregiver. It is a very hard and discouraging situation but it must be overcome. It is one more symptom. Also it is exhausting being on call 24 hours a day 7 days a week.
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 (Smart Patients) 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.
AJK2001 said:“A demanding selection of external caregivers and their renewal depending on the circumstances and evolution of the disease is essential to maintain a good quality of life for both the patient and the patient's family”. This AJK2001 suggestion is essential to me.
There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand. It is then when he attacks the feeling of guilt, unfairly. Be careful.
No one will understand you unless they have been through such an experience. There is always the feeling that you could do better and always keep your nerves under control. We are not perfect and whoever does everything we can is not obliged to do more.
It is worthwhile for the caregiver to report on the typical progression of the disease and then take each day as it comes. All patients are different and even with a lot of accumulated experience about the disease the caregiver must be prepared for what he did not expect.
Faced with the dilemma of caring for the patient at home or in a nursing home, I share these words from “Dance 1955”:
“How is it that there is so much ignorance in nursing homes hospitals etc etc.? When my husband was diagnosed with this disease I didn’t understand it either so I googled it.
Whenever I take him somewhere a nursing home/hospital I always give instructions/ information about the disease but it doesn’t get read they don’t have time so I have to spend all my time going in and eventually taking him home as it’s easier for me in the end.”
In our case, we decided to care for the patient at home. This implied a significant economic cost and a demanding personal dedication on the part of the caregivers, especially the leader caregiver. As well. On our case and circunstances I believe we did what was best for the patient, caregivers, and family members.
On april 2022 Bazooka111 contributed these meaty reflections with which I am completely in tune:
“I think I’m losing my mind as a caretaker. In fact, I feel like I have lost myself on this journey. Respite is my salvation.
We all have this mountain we are climbing, and some days feel like we are barely hanging on … I choose to focus on the good. I am not naive, I realize I am going to have to eventually say goodbye to my Mother from this dreadful disease —- but, I refuse to let anticipatory grief smother the days, weeks, months that I do have left.
Mental Health is important for the caregiver, but also for those we care for —- talk to them as if the disease isn’t present, make them feel included, share your day without requiring a response, offer insight on what is happening in the world …. Love them as you always have, and don’t allow this disease to rob them of some of the simple things that we as their caregiver can bring.
Choosing joy for me tends to burn away the pain.
Being a caregiver is something that no one will ever really understand, unless they have been there.”
Finally, reproducing the phrase of Anne-Heady: "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
I hope and I wish these notes are useful.
Hug, luck and courage.
Luis
Thank you so much. This is so helpful.
Thank you that was useful. I totally agree with Bazooka111 that you quoted from, I have said many times I’m not myself any more. I feel different and so much older! I miss laughing and friends confiding in me and asking for help, they don’t like to add to things-but that was me. Yes it is important to share the load with friends and relatives. I find having a few moments to myself just to think freely is bliss!
I’m so sorry this is happening to you. My mum had CBD and passed away last April. It is a horrible cruel disease which not many people understand. I think going into a hospice would be a really good idea. It will give you some respite and they can make a plan for making things easier for you both at home. It might be that you need some help at home now. The hospice helped us when we were In a similar situation as the progression is so fast that it seems you end up In a crisis situation over night. I’m sure your husband is extremely grateful even though he may not show it now, remember the person he was before this horrible disease and stay strong, you’re doing an amazing job x
Ty so much for your response! I really appreciate it, more than words can say.
My husband was diagnosed in 2019 but was showing symptoms since 2017. Was initially diagnosed as having Parkinson’s in 2018 but later changed to PSP. His symptoms are almost exactly the same as you describe, he used to be very active, caring, independent and is now totally dependent with severe balance, speech, vision and swallowing issues. He can still eat all types of food but needs to constantly sip water to help swallow it down. He also groans a lot which he says he can’t control… starts in the mornings but is much worse in the evenings. Constant groaning for 2-3 hours is normal, also while sleeping. Stops and then starts again. Because of this groaning/moaning it’s difficult to sleep next to him which makes things so much more difficult. He is also unable to show much emotion, for example can’t cry, so behaviorally is a very different person. PSP is really strange and kills 2 people together - the patient and the care giver. All your frustrations and emotional outbursts are normal. Take care.
Thank you for your response. Sounds like we share the same problems with this horrible disease! We have to just do the best we can. That’s all we can do. It is so hard !
Hi Sjacob!
I'm sorry PSP has entered your family.These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
I am not a phisicyan.
During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family and if the notes-document with our experiences and our informations are of your interest, do not hesitate to let me know to send it by the private mail of this chat.
Hug and luck.
Luis
I can relate to the groaning. My husband has just started this in last few days. He does it awake and asleep. I’ll ask if he’s hurting and he tells me no. I know something is going on.
Dear Laurel,I totally understand what you are saying because we faced the same thing with my mother who has been diagnosed with PSP in 2019.
We are having very hard times first to cope with what is going on so quickly and second with the idea of I wish we live normal life 🥲 You can ask for help we hired professional nurses for my mother to help us and to keep an eye on her.
What is happening to your husband now is related to the changes and progression of the disease. Try to enjoy your moments with his as much as you can try to talk to him and appreciate everything appropriation is very important.
We also read Quran for her and it helped in relaxing her and keeping her more calm .
I wish you all the best
Take care of yourself
I could have written a lot of what you just wrote verbatim. Including the time line of 5 years of symptoms then a final diagnosis two years ago.
My husband died at home and peacefully one month ago. I don’t say that to shock you, I just want you to know I am writing now as a bereaved wife.
This disease is never ending struggle. Both for the victim and for the carer . My first question is do you have support? My husband benefited greatly from speech therapy and physical therapy, but they can only do so much. They cannot stop the progression, they can only slow it down. My husband eventually had a feeding tube inserted. That was one year ago. And that is when the weight loss began. The feeding tube gave us extra time and reduced but did not completely fix all of the coughing and choking. It also became the only thing keeping him alive in the end and once you get to a certain point , elongating life feels ultimately cruel.
He had a catheter for his last 6 months and became incontinent. He eventually could not speak. And I regret that we did not both learn sign language together before it was too late.
I have two teenage children and the choking episodes coughing episodes, Along with the frequent falls that resulted in some broken ribs and a lot of bangs on the head Were the most traumatic for my children. They saw their father slowly get taken away by PSP.
I feel mean writing this because I’m sure you are looking for something hopeful, but I am trying to give you the reality of what to expect and prepare for and perhaps to persuade you to seek some sort of support, be it hospice or at least counseling. Hospice doesn’t necessarily mean the patient have to be dying imminently. They offer respite care and comfort care symptom control. And they saved my sanity as well as my relationship with my husband because I too was getting angry and frustrated and absolutely wrecked exhausted physically and emotionally. I now regret every impatient word or moment I had with him now that he is gone. Neurologists are pretty much no help at this point, it’s the carers and visiting nurses, palliative charities and hospice people that help. Without them, my husband's final stage would have broken me.
I’m not traditionally spiritual, but, Godspeed. And feel free to keep asking questions and please please take care of yourself as best you can.
Thank you so much for your response. Everything someone can tell you helps. I really appreciate it. This is something I would never wish on anyone. It is so hard. You just want your normal life back.
Trouble, what a long road. We also have two teenagers in the house, and that's the worse part of it for me! How are your kids coping now with the loss?
My daughters are grown we have grandchildren and 4 great grandkids. They know something is wrong( great grand kids) they are kinda scared of him now. It breaks my heart.
I know exactly how you are feeling, my wife was diagnosed in 2020 after 4 years of wondering what was going on. I now have to do everything for her even those things no husband should ever do!. Many a morning I have wanted to not have to get up. I have gotten cross with her sometimes but I have to remind myself that it is the PSP not my once sparkling, happy, busy wife. You are not alone. We must all cling together to endure this cruel condition. Love and Hugs from Yorkshire UK
Ty for your response. This is a terrible condition! It’s hard to understand, WHY THIS IS HAPPENING TO US! What did we do to deserve this? But it is what it is and you have to make the best of it.
I am so glad you have found this site and feel able to share your feelings & frustrations with us. Yes we know exactly what you are going through and how you feel. I looked after my Mum for several years and found it very hard. There were times when I lost it and shouted at her - why did she try and get up when she knew she would fall - her answer would be at the time she thought she could get up and walk. What I found useful was something someone on this site said and that was I wasn't angry at her, I was angry at PSP and taking that attitude did help us both - I was able to manage my frustration better and I think acknowledging we both were angry about PSP gave us more shared ground. I also used to try and walk away and count to 10 when confronted with another dinner/drink dropped on the floor. Poor Mum didn't want to be in the situation anymore than I did.
Getting carers in was a big step but a very important one and if you can afford it I would really recommend it. If there are some tasks you find more difficult, physically or emotionally get help with those. I found it hugely emotional feeding Mum, especially when she refused food, so mainly I got carers to do this (I think the uniform helped Mum eat more - it was harder to say no to them than me), I still did a couple of meals a week, so I could see if there was a decline, so didn't feel like I was losing "control". However I didn't mind toiletting so that was a task I kept.
Do try to find some me time - keeping up with friends is really important, doing an activity you enjoy - it allows you to release pressure and makes you less likely to burn out, which would be the last thing your husband would want.
With plenty of carer visits, Mum was able to stay in her own home, which was what she very much wanted and died very peacefully surrounded by loving care (from me & the carers, who were very fond of her).
I know it's hard but you are doing a great job and somewhere deep down your husband knows that, it's just that he's locked away and can't tell you how much he appreciates you. xxx
Thank You for your response. It helps so much to know, someone else knows exactly what you’re going thru. I’m trying to do the best I can. That’s all anyone can do.
Yes I completely understand what you are saying. I recently myself had to admit that I'm burnt out. My loved one and your husband time frame is about the same. She is having all the issues minus the falling she has been chair bound for almost 3 years. About 6 months ago she became 100 percent assist. Has is so hollow and frail. Drinking and eating are a full days work. She says she is the boss and in charge of she wants to go out we should always take her. She refuses to see how hard it is on her body one top of mine. She throws tantrums of she dosen't get her way. It's the hardest thing I've ever been through in life. But she wants to still live even with no quality of life. Hang in there be easy on yourself. We all have our melt downs. This disease is very consuming of both parties.
Thank you for your response. And yes this is the hardest thing I’ve ever had to deal with. I took care of my dad until he passed and then my mom and now my husband. I wonder who will take care of me? I don’t mean that to sound selfish. But I can’t help think that. Sometimes I just want someone to take care of me. Do something special just for me. But I love my husband with all my heart. He didn’t choose this….
I completely understand. It's the small things. I've been told I would be blessed for doing my best. So I just hope someone takes care of me the way I have for several people. Stay strong
I am trying to take it easier on myself and not stress over the things I can’t get to. It will still be there waiting on me! ♥️
Hi Penny so sorry to hear about your husband and more sorry that he had this awful disease and you had to both go through this pain Take comfort in that you cared for him and that he had you my friend it’s the most cruelest thing I’ve ever seen
Please be kind to yourself one day a cure will be found but to late for our beautiful husbands hugs to you xxx
I could have written your post myself,it is so similar to my experience with my husband. He passed away nearly 5 yrs ago. My biggest regret has been that I was not patient enough with him at times and I hope and pray that he could understand. I wish you the best in your journey,try and take care of yourself along the way!
Thank you for your response. It helps to know that others have walked this road and we’re not alone. It is the hardest thing I’ve ever had to do.
Laurel I think we are in just about exactly the same place. I understand what you are saying, so if misery loves company, I’m with you. I’m addition to the things you brought up, 15 times a day I have to jump up and retrieve whatever he dropped, try to stay humble when I get blamed for things he can’t do, can’t leave the bathroom while he showers, constant lifting, that UStep is heavy!, putting his shoes on and on again, several loads of laundry a day, awakened several times in the night. I don’t begrudge doing these for him but it is so wearing. And the constant worry of a bad fall. I don’t have any words of wisdom for you, but know what you are going through. I’ll keep you in my prayers, it’s all we have left.
Thank you for responding. It does sound like we are on the same path. So maybe we can walk it together. Prayers for you also. Take care of yourself. I am starting to learn that.
I am in the same situation but with my brother. It is so so hard. Prayers for you and your husband!
Thank you. It helps knowing someone understands! ♥️
Laurel,Just wanted to add to all the other good folks here, you are expressing what so many are feeling. You are not alone. In my house we're not quite at your stage, but I see it coming, and feel for you.
Lost
I know it’s gonna get a lot worse here. When he is completely bed ridden. And can’t eat. That’s what I dread. This whole thing is a LIVING NIGHTMARE. I wish it would have skipped our household!
Be tought
Hi, my mum has CBD, my dad is primary carer. My mum is 68 too and has declined significantly in the past 6 weeks and we are coming towards the end of the journey. It’s tough and horrible, beyond horrible. I support my dad most days in and around work, he is doing amazing but is exhausted - physically and mentally. We have care 3 times a day, this has been in place for the past 7 weeks as mum is immobile, has double incontinence, severe cognition decline and is just about holding onto being able to eat and drink (although getting challenging). I contacted a local hospice this week, it’s at that point, it’s Hospice at Home care and will support my dad with respite. My advice is make the most of friendships, true and good friends will be there for you, even for a drop in cuppa and chat or evening in front of the telly. Having people you can talk to openly is so important. Contact a local hospice, their support is invaluable and can adapt over time. These are a cruel, evil set of diseases - horrendous for patient and carer(s). I wish we contacted the hospice earlier. Remember…we are all going through trauma and grieving slowly and progressively. You are doing amazing. Take care.
Thank you! ♥️
Good morning Laural1995,
Sorry to hear about your husband.
My dad was diagnosed with CBD in May 21 (although symptoms were from 2017). Reading between the lines dad is further ahead than your husband.
My mom is my dad's sole carer. I help on my non working days and take him out for a couple of hours. My dad is completely wheelchair bound now.
We were allocated a neurological specialist nurse (who has been a god send).
She put us in touch with the wheelchair service (my dads wheelchair is measured to his needs). We have had so much support from the occupational therapist.
Lastly, the nurse referred my dad to the hospice day service which he attends weekly. While there he receives physio, speech and language support as well as being involved with lots of social activities. The nurse is in regular contact with my mom.
If you haven't already it might be worth getting in touch with the GP or your husbands consultant and request a referral to the neuro nurses.
Apologies if all the above has already been suggesteded - I haven't read everyone's reply 🤦♀️.
Take care and try to take some time for yourself.
Thank you for the good advice! I appreciate all recommendations!
Hello Laurel
I understand and can relate to everything you say. My wife Ang was diagnosed in Feb 2019.
The falls have mostly stopped but that’s because she cannot walk without help, swallowing has become a big problem especially in the last 6 months, her big problem is her eyes, perpetually looking upwards and her head follows so staring at the ceiling, very frustrating for her.
But from the care side - it is constant. Even at night needing to go to the loo or just getting stuck in an uncomfortable position, sleep is in about 2hr chunks we’re both exhausted.
About 3months ago after a big fall the district nurse started calling weekly and she suggested getting a ‘personal Assistant’. We’d tried the generic care providers, in/out in 20mins and never the same people - that did not work for us at all. So we went on a recommendation and got our PA, it has taken a while to get to know each other but it is a revelation. We started at 2hrs twice a week, that’s now 3hrs most days what a weight off of me, it breaks the endless frustration, time to chill go get a coffee. I rarely get cross with Ang now and cope much better. I had reached burnout, angry not coping and not taking care of my wife properly.
Seek outside help - some hospices offer at home sitting services, and respite care (Ang has just had a week in a Katherine House Hospice) - marvellous for both of us.
Talk to District nurses or your doctor.
Burnout is horrible - I know! Don’t blame yourself this is the insidious side of PSP.
Take care and keep strong, you’re doing everything you can
Best wishes
Greg
Thank you Greg! Great info. It gives me something to think about. Take care.
sad but similar. my husband was diagnosed less than 2 years ago. it is tting tiredotugh and the future is frightening .....i am getting tired but soldiering on.
Yes we have to soldier on! There is NO CHOICE!
Hi Laurel,you have described my life exactly ,I can't believe how our lives are so much alike,.my husband is in the same predicament and I too have awful days of dead ,we too have a strong loving marriage ,I would do anything to help my husband but psp is taking him away from me ,he was always a loud funny man and now doesn't say much. It is so difficult isn't it?you're not alone and I wish you both all the strength you both so deserve, take care of yourself
Ty for your response. It helps so much to know someone understands. Because so many don’t. People think you can keep doing all the things you use to do, but it’s impossible. They just have no clue! I find myself trying to explain, and it’s like it falls on deaf ears. They just don’t understand. My whole life is upside down. I am so overwhelmed at times that I don’t know if I’m coming or going. I forget constantly, if it wasn’t for making notes I’d be lost for sure. The thing is he didn’t choose this for his life, I try to think about that all the time, but I’m just so tired physically and mentally. We have to hold each other up, I so appreciate your response! You take care of yourself also, that is easier said than done!
Ty,yes I have to write notes too and often go to the fridge and then can't remember what I want ,it's like a brain fog,!we've been married 49 years too and I just can't see that we'll be celebrating our 50th,I know my husband will still be here but I can't face it, it's so sad isn't it.? I try to stay positive but its so hard especially when neurologist says there's no treatment that works,it's like looking down a black hole sometimes ,it just saps our strengths but what else can we do except live for the day and try and carry on as best we can and get as much help that we can,take care
Yes, so very true! This whole thing is like you are living in a nightmare and you want to awaken and find it is all a bad dream. But you don’t, and you have to realize this is your life now. 😢 we have to take it one day at a time.
All I can say is that the hurt goes on even after they are gone. It does get better every day but the sad moments can creep up on you without warning. It can be the smallest thing that jogs a memory. You just have to go with the old sayings of "life goes on" and "life is for the living". Wishing you the best.
I am going through the same process. it all started 2 years ago. it now takes nearly all my time. I am frightened as to what the next year will bring; will i be able to cope?
Hi I relate to everything you say, in my case it is role reversal my wife was diagnosed with PSP in 2019. This week was spent in hospital with a broken hip following a backwards fall, now she’s home and it is back to being a 24/7 carer but now it’s worse, the fall has triggered more problems. Her eyes which are already fixed in an upwards stare have now started not to focus and her good leg has lost control it doesn’t go where she wants it to, so walking is almost nonexistent.
The trauma of the fall has accelerated her progression ( this also happened at Xmas with her last big fall).
All in all it is horrible to see her decline and as she does so the workload grows, it’s now time for a lot of carer attendance. It’s too much to do alone, I know, doing so nearly broke me! I to was getting angry but it was out of frustration at not being able to cope.
It a really tough journey for a couple to travel, all you can do is be there but it is so very hard.
Stay strong and don’t blame yourself, and don’t try to do it all let people help you to do so isn’t being weak it will help you cope. You can do this!
Ty for your response. Things cont. to get worse everyday. I have no help. I’m going to have to check in with his dr to see if there is any help out there. I’m so exhausted physically and mentally.
I am in a very similar position myself. My husband is 73 and was diagnosed in 2020 but symptoms started around 2018 after his Mum died. He became withdrawn which I mistook for grief but when our friends started to comment that he was not that talkative and he then began to lose interest in his classic cars which he loved I started to think something was seriously wrong. The hardest thing for me is not being able to have a conversation with him as he struggles with his speech and mostly answers with a Yes or No. i feel I have lost my best friend and grieving for the life we had. I am his full time carer and my day is spent attending to all his needs. Washing, getting dressed, helping him to eat as he cannot grip utensils. Bathing his eyes several times a day as they constantly stream and are sore as he has blepharitis. He closes his eyes a lot and drops food down himself as he has double vision. I have days where I feel exhausted as I get up to empty his catheter bag sometimes twice a night or he is restless and can’t sleep. Everyone tells me I have lost weight and doing too much but I don’t want strangers coming in at all different times which is unsettling and difficult to plan outings as you don’t know when they will turn up. I am a strong person but sometimes I have a cry and then just tell myself that we still have one another and i know he appreciates everything i do for him. We tell each other we love one another most days. He needs me as much as I need and want to care for him despite how hard it can be. PSP is challenging for the Carer as there are so many symptoms to try and manage but just try and deal with one thing at a time. The urinary incontinence was the hardest thing so far but now he has a catheter it is easier and we hope to have this changed to a Suprapubic catheter going forward. My advice is to not look ahead and take each day as it comes. Try and get out as much as you can and do things that make you both happy. Watch a nice film together or we occasionally go to the cinema. Most cinemas cater for disabled wheelchair users. I’m hoping to book us a cruise to celebrate our 20 yr anniversary next year. I do a Pilates class once a week which I find gives me some relaxation and respite for a few hours. Just make some time for yourself which isn’t always easy but you need to remove yourself from the situation occasionally. Know that your husband is still your soulmate even though he may seem like a stranger. He hopefully still has self awareness and knows everything you say and do for him is done from a place of love and kindness ❤️
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