PSP Association

The Other Man

The "Phantom Stealing People" (PSP) my new acronym!! Charles isn't truly here anymore. He's taking Trazadone at night and they just upped the dose again to help him sleep and he does, all day and all night. Though stable the apathy and silence makes me so sad I cried buckets yesterday.

Even though they say no dementia per se, it is so. He's like a 2 year old in many ways.

What hurts the most is the lack of speech or attempts to use the tools for communication. His love is somewhere but in a glimpse or so here and there.

I can't remember what he looked like or how he was in the past. Julie, you said it came back and I hope it will but now its a distant memory of our life together.

No one understands! I feel so abandoned and so lonely. Today is another day and I'm managing but my broken heart, I fear, will never heal.

Thanks for your support, everyone.

Cuttercat

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It’s all too much at times.

I miss having a normal conversation with my dad. It’s a guessing game now what he’s saying, I can catch the odd word.

The only people that properly understand are the families going through the same emotions with PSP.

Are you caring for your loved one yourself or getting help?

Take care x

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Sending you the biggest hugs ever. Did you get my email yesterday? I so wish I had a day to spend with you, but don't leave R anymore, as you well know.

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Sending you the biggest hugs ever. Did you get my email yesterday? I so wish I had a day to spend with you, but don't leave R anymore, as you well know.

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Cuttercut it is such a lonely disease. Nobody understands apart from the people on here. So don't sit alone crying. Talk to us. Some of us have been there and come out the other side. I won't pretend it's easy because it isn't. However you will get there just as the rest of us are.

You will never forget your love but you will remember the happy and loving times you had, and you will see him as that man too. I never thought I would and sometimes I have a bad day and recall the day before he died. You will go through similar things but you will survive. I promise you.

Love and great big hugs to you.

Marie x

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Thank you Marie.

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Cuttercut I agree with what Anne has said. The man you love is inside that body. You might not think he understands what you say to him but he does. So give him cuddles and hugs and kisses. You won't regret it, and you will make him so happy even if he can't say what he means or do anything to let you know. Tell him you understand and he doesn't need to tell you he loves you because you know. You will be so glad you did.

Big hugs to you. We are always here for you.

Marie x

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I do all the time, each and every minute of the day. Maybe because we live in this silent world I can't tell what he thinks, but I let him know what he means to me.

Cuttercat

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oh cuttercat, I feel so sad reading your post. it must be so hard when it is ur life partner affected. dad has PSP, and I get so sad with the loss of the character of the man he once was, I know the "old dad" wudnt b able to understand his own apathy and personality changes. the lack of speech is also so hard. if u are having difficulty remembering how he once was or looked,maybe instead remember how he made u feel, and the experiences ye had together xx

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Thinking of you.........

Patrick xxx

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Patrick

Thinking of you too. How are you?

Marie x

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Hey, you are talking to loads that that fully understand! What you are going through is extremely hard, but you will survive. Eventually, when you are the wrong side of the PSP journey, you will remember the Charles you fell in love with. It will take time, but it will come. But now is not the time to think this. Now is the time to love Charles as he is, your husband, your lover,your friend. OK, he can't fulfil any of these roles, but in his mind, he is still there. You can still communicate these memories, these feelings, do so, for both of your sakes.

Lots of love

Anne

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I know he can hear me, but is he comprehending? It takes so long to cognate and I have little patience. But I hug and kiss him all day.

Love you,

Cuttercat

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Yes he can hear and understand....I know Bruce could. Infact I found he was able to respond better to others than to me hahahah. In 2016, B even helpped me navigate how to get to his mothers house in Arizona from Arkansas!...Your man may not respond but he's there....Don't get mad at yourself for losing patience and don't let impatience control you .... :)

AVB

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That is so true . What lovely words, Anne...

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It's a scary thought CC....What now ...I thought that I had it all planned out I would continue the things I had planned in my life (being a missionary) before I got married. Maybe do some travelling, go back to school, ... But alas I sit quietly waiting for the pain to move on. It infact, has gotten worse. And even the pain, I don't know if it's real, or if I am using that pain as an excuse to just not do anything. I pray, I cry, I wonder, . Today I got a membership at a Gym. It's hard to go there without Bruce but it does feel good to work out; so I think maybe this is good....and hey its only 10 bucks a month ,not too bad....I also go to counselling and the lady there is very wonderful. I haven't done grief therapy as they have weird hours I say all this to tell you that I can relate, as we all can....

You know Trazadone, as with any sleeping pill , anti anxiety, antidepressant, does something to you and can leave you feeling more groggy and in a haze than without the stuff. If you feel like he is experiencing more dementia, you might ask if Trazadone will exacerbate any dementia etc. Why did they double the dose , was it not being effective?

Well CC , I do hope you can find that at least, you are not alone in how you feel. I pray that you do find comfort it's not easy and all I have are virtual hug....Get some rest take a break from PSP (the Phantom) and try somehow to rejuvenate...

((HUGS))

Andrea...I

For me, one of the MANY verses I seem to go back to is in Isaiah I hope you can find some solace here too.....

"Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you, I will help you, yes, I will uphold you with My righteous right hand." Isaiah. 41:10

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Oh dear what a horrible illness it throws all these different things at us, you think your loved ones are ok, then they throw all this at you. I agree with Anne he is still there, but just can’t show it. George is wheezing and coughing again, you think after the last lot of infection, he will be ok, but he has started again tonight xxx. Sending you a big hug. Yvonne xxxx

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You are spot on describing my husband, except that the neurologist refuses to acknowledge even the possibility that he could have PSP. A primary care physician says that's his opinion, but the neurologist is holding onto Lewy Body dementia. I am the sole caregiver and am on 24/7; we have no family here. I'm having trouble with our long-term care policy getting started because of the elimination period. The Medicare rules clash with us because we r going to outpatient therapy. You can't have someone come in your home and get it paid for through Medicare if you are getting outpatient therapy because they say it's evidently not taxing on the patient to get where they're going. That's just so not true; we continue the outpatient therapy because of the quality of people we're getting, and it is VERY taxing on both of us. I'm not sure what I'm going to do. I'm paying every month for a long-term care policy and can't seem to get it started. I thought I was lucky to have it until I started trying to figure out just how to get it going. My husband is very demanding and I don't even have time to make a phone call. I do have friends who run errands for me from time to time, and will do other things if I need them to.

As for the apathy, it's gut wrenching. I am incredibly sad and overcome with grief on a daily basis seeing him like this, so opposite to the vivacious, creative, busy, happy person he was. It has rocked my Faith and is truly having a detrimental effect on me. I try not to let my feelings take over because my goodness he is the one truly suffering. I feel selfish when I do. By the time he goes to bed at nite I am worn to a frazzle. Everyone is right. No one could understand unless they r in the same situaton. Prayers and best wishes to u.

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Boyce3600,

I hear you on the elimination period, but - trust me - once you finish it, things WILL get better. We just completed my mom’s in December. I hadn’t realized it was 30 days of service - as in actual visits paid out of pocket. OR that 3 days per week = 1 week! ( that’s how it was in our bankers life policy) So, my advice would be to use just a few hours 30 times. And then, we now don’t pay premiums and everything we paid after the 30 days (including premiums) has been reimbursed! Once he qualifies (which he no doubt will - it’s all based on I/ADLs), then you’ll get reimbursed each time! I think the companies “get you” because you have to convince yourself you need the break AND be able to front the cash or willing to charge it. I cannot even tell you how many calls I made. So frustrating! But, once you see the policy ( and understand it), you will be thankful to have the services!!! Hang in there, don’t give up on fighting for what you paid for!! You’ll come to see that you needed the help more than you even realized. Good luck!! Let me know if you have other questions about the LTC policy.

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MHGrace,

Thank u for your explanation. I am encouraged by you to dive in and get my head above water asap.

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You’re welcome. Keep us posted on your travails. It helps us all to know the struggles as well as the eventual solutions!

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Okay I will I thought of one other thing I know all policies are different and this is a major question as to whether or not mine will allow me to choose who I use during the elimination period or if they would have to approve them that's a biggie how was it for you

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I didn’t even try finding someone on my own. I asked them for a list of preferred providers and chose one of those. Ours made it really clear this didn’t “guarantee” coverage, but both locations we used from their lists were ultimately approved. There are many, too many, obstacles to deter you, but if you fight hard enough, be you will get what you deserve! I will also say that when it came to the final stage of determining “medical frailty” I certainly didn’t downplay any of the various ways that my mother needs help (I was not dishonest, but just didn’t downplay it either, which I think is our instinct when we’ve been doing so much for so long. And, frankly, it is a sad realization but this is exactly why we got LTC policies, right? Hang in there!

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U r so right. Can i ask one more question? Did u use therapists or caregivers for respute, bathing, etc? And it was in her own home?

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Of course - ask away! Makes all my frustrations seem *slightly* more worth it. We have used both Home health aides and personal care assistants for respite and always in her or my home.

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Thank u i hope to make some calls in the morning. Hopefully u wont hear me screaming.

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If so, you’ll hear me screaming with you!

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Thank you for your thoughtful post. Each night I pray I can do it all again tomorrow . Sometimes I realize it has had a impact on my health, faith and spirit. I am anxious to the point of nausea and feeling like my insides are shaking. Our children are not the happy young people they were. Yet, I know we must continue to do our best for this wonderful man. I feel selfish complaining that I cannot leave the house , when he can’t even get up from the chair.

For me, the pure devastation of watching him bravely suffer is sometimes more than I can bear. The uncertainty of what’s coming next and my ability to care for him is scary. I would give anything to just have one conversation with him. To make sure he knows what a good man he has been, to thank him and to know what we can do for him now.

I understand you being worn to a frazzle. I think it is difficult for outsiders to realize how much time and hard work it can take to care for someone. It is certainly not an easy task. Best of luck do you.

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Perfectly stated, especially the comparison of not being able to leave the house vs not being able to get out of the chair!! Tuesday will be his bday...only his 68th... and as part of a gift to him I had a classic car enthusiast friend come over today to get his 2 cars started. With our overwhelming daily schedule, that has gone by the wayside. He was able to walk to the garage, with assistance once, to see how it was going. Just watching him be on the sideline instead of with his head under the hood was so hard. If I had a nickel for each bucket of tears there have been.....! Are you ever angry? That has been and is something I keep trying to push down, but its a raging fire inside of me that I can't put out. We r young, with things to do, plans to carry out, and happiness to experience. Should I be saying "were"? A friend said I "just" need to resolve myself to the fact that I am now a caregiver.

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How long has he been sick.? I totally understand your feelings regarding him on the sidelines with his cars. Dan is a motorcyclist . He loves his bikes. He has 3. We raised five children . He worked hard many hours driving a forklift. My mom lived next door and lived to 97. She was never disabled , but he was always there with me to love and support her.He really was always the first guy running out to help family and friends. We never took much time together for ourselves . I joked and said when he retired we’d be sick of each other.

I am so happy he had his motorcycles that he loved. Our children never had a grandpa. He wanted to a wonderful grandfather, and never had the chance. Our 3 grandchildren see him as sick and unable to communicate. Sometimes they seem uncomfortable and scared. He deserved to know and love his grandchildren and certainly should be able to know and remember him. He is truly an incredible loving man. He was always the fun parent with the kids and the life of the party. His lack of presence is noticeable. Our children are also anxious and depressed. They all try help but the sadness causes frustration , agitation etc. I wish this awful disease on no one, yet I’m it chose him.

We were going with our kids & grandkids to Disneyworld. Now some of them are going with their in laws . He was fixing our daughters old doll house for our granddaughter. Now her other grandpa must do it. She will never know who he really is. That is tragic and unacceptable to me.

Yes, I am angry. This experience is unbelievably awful. He was always the strong one.

Thank you for your reply.

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Buckets of tears and anger every day.

Cuttercat

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Dear Cutter;

I sure do understand what you're feeling. The very first symptom I now realize, looking back, that I experienced with my hubby was the apathy. The loss of "him". Because he's a few years older than me, I put it down to "aging"...thinking that he was aging faster than expected but nothing worse than that. I was confused, depressed, searching, pushing him, provoking, crying, trying to understand what I was feeling, what was wrong, what to do...was it me? my fault? Was this normal? Why didn't he want to DO anything? GO anywhere? SEE anyone? TALK to me? Have some fun?? Have some relationship?

The only good thing about the diagnosis (first PSP, then CBD) was that I realized it wasn't his choice. He wasn't rejecting me. He was losing layers of himself, but he was still himself inside. It's a cruel, brutal disease. All we can do is be grateful for the years when they were our equal and we had a relationship that many would envy...and then love them and give them what they need now.

Love and Hugs to you during these hard winter months. Spring will come... :-)

Anne G.

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Trying hard to not weep as I read these sharings. Being at the nursing home with my husband (CBD) isn't a comfortable place to let myself feel.

I also miss my best friend. This is so hard yet much worse is to come. I am so grateful for those who share their experience, strength and hope so as things progress, I will realize I am not alone.

Has anyone's loved one experienced combativeness, aggression and hallucinations with CBD? This is becoming a daily problem around 3:00 PM. Nurses are going to ask the doctor to prescribe something for this.

At times it takes 6 or 7 people to change him. Usually it only takes 2 to 3. Because he is moved with a Hoyer lift and his total dependence, it is becoming increasingly more evident that I can't take him home to care for him. Along with this comes the guilt for not doing so.

We, too, had many plans to enjoy life. I get very sad when I see much older couples being together and know that can't be us. That being said, we are blessed as we have had a marriage which I dreamed of. I try to keep that foremost in my mind and try to remain grateful. I miss him!

Liz

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Dear Liz,

I saw your post as it came through as a reply to mine of 24 days ago. Your question is worth its own new post, if you feel like repeating it, so that more members will see it? We CBD spouses are a minority here (though it is much like PSP, it does have it's unique characteristics) and I'd like to know that as many of the CBD folk as possible saw it.

Will you repost?

Hugs to you XXX

Anne G.

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Thanks Anne. Trying to figure out how to copy & paste from my phone. If I can't, will do from computer at home. Liz

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Hi Liz, Anne is right, post your question separately. I can't answer your query, as it may be a CBD symptom. There are others on here with CBD partners, your post might bring someone else out into the open. It always helps to know you are not the only one going through these horrors.

Sending big hug and much love

Lots of love

Anne

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Hi Anne, I too felt exactly like you at the beginning. Even sat him down and talked divorce at one stage. His main problem then, was the two year old tantrums, that were increasing in length and frequency. As I talked to him, that first seed of doubt was placed about there being something wrong. That was quite a few years before diagnoses. With hindsight, there were others before that, even going back 20 years. You are right, this is a brutal, evil disease.

Lots of love

Anne

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Thanks for sharing.

A hug

Luis

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Oh Cuttercat reading your post made me cry and cry, something I have been holding in for some time. I understand what you are going through. Little by little this horrible disease is taking my amazing talented husband away from me, and when I read from all the posts what is still to come I get so frightened and wonder will I be able to stay strong for him. I lost my Mum not too long ago and my father is currently in a nursing home with dementia and now my loving husband is being taking from me. It is not fair and I question why all the time and cannot find any answers. I wish someone some where would give us all a break from this hideous nightmare. I feel so very helpless..........

Ladyalone

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It's overwhelming and it sounds as if you are in the middle of it. How sad to be surrounded with sadness.

Yes, this website is my saving grace. Thank you Ladyalone.

Cuttercat

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Oh I understand. Each day I wonder if this will be the day we take another bad turn.

The loneliness is overwhelming but this groups makes me feel more a part of the world.

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I understand. Completely. The abandonment by others is what saddens me for my Steve. We are in an ongoing state of grieving as carers. I am there wirh you....prayers. kelly

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CC, so many of us can understand how you are feeling. I had some of it with David. Family members stopped coming because they "Didn't know how to act with David" They felt embarrassed around him because they didn't know how to handle the illness.

We have no choice, it's our partners, mums, dads etc that are sitting there needing us more than they have ever needed before.

I got more isolated as time went on, and even five months after he died, I'm always sitting here alone in the evenings, knowing I need to do things, but not knowing what to do.

One thing I can offer is that the good memories will resurface from time to time. The "Do you remember when..." Type conversations.

I used to talk to David about his funny stories that he had told me in the past, and we used to laugh about them. David had a silent laugh with PSP but you could see his shoulders moving a bit so you knew he was laughing. It made the carers laugh too when he did it. Small things, but they help keep it together.

I am just starting to think of a few of the good times before PSP now, and it is nice, but I enjoyed talking to him about them more while he was still here, so that may be worth a try. Keep talking, it's something I should have done more of.

But even more importantly, keep believing in yourself CC. You can and will go on. You would feel even worse if you didn't.

Big virtual hugs, I'd give you the real ones if I could.

Derek

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Kelly

I had that too. So called friends who didn't even bother to phone. The best thing you can do is resolve when this is all over to make new friends.

Do as Anne is doing and go on holiday or even better perhaps go to the local gym as Andrea is? It will make you feel better to get out? Only you will know what is right for you. You will survive this. We all will.

Hugs to you.

Marie x

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Cuttercut when your love is in bed tonight get out your old photographs. Then you will remember what he looked like and how you loved each other. He knows you are there for him now even if he can't tell you.

When you look at the photos you might cry but come back to us as we are here for you.

Big hugs.

Marie x

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Cuttercat,

My heart goes out to you. Hang in there. And thank you for sharing your story and feelings with us. We are a few years (I hope) behind you on the progression scale, but I appreciate you sharing your experince so much. I hope it helps you, and I know it is helping me to prepare.

Sending hugs and love,

Dick

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Your words express exactly how I felt the last few months of my husbands life. He was a charismatic man who could....and would talk to anyone. It is a lonely, lonely disease. Please know we are all here for you to talk to.

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Dear CC I'm with you all the way on this subject, to me it's the worst part of this crappy disease. Ben tries so hard to try to communicate verbally but I can rarely make any sense of what he's saying and in the end he gives up. How trapped must they feel, I sometimes think that sleep takes away that frustration but leaves us sad and lonely. Double edged sword! I also try to visualise the way Ben used to be but it's difficult as the time passes, you get used to the way they are now but how you want that person back.

Sending love and hugs

Kate xxxx

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You say it perfectly. Such a sad, sad time for us. I'm so grateful I have you and everyone here to help me get through this.

Charles is stable today. Tired but ok. The silence is deafening.

Cuttercat

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Hello Cuttercat,have not been on the site for a few days,taking a break,lol if that's possible.Not much I can add to all the wonderful post above.Do hope you are feeling a bit better.

I do mirror your feeling as well,but we must carry on because we are all they have.sure wish I had some words of wisdom for you.

((((((Hugs)))))

Dee

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So nice for me to read your post. It is exactly how I feel. I try hard to be postitve and share stories with my husband , but sometimes he looks at be with a vacant and blank face. I keep telling myself that my sweet and kind man is still there. Every once in a while I still see a bit of him.

It can be unbearable at time. Sadness , loneliness , worry, anxiety, cost, anger and the physical work of caring trying to take care of him. He is such a great guy and i hope he knows we are trying to do our best.

Good luck to you. You’re not alone.

Karyn

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Yes Yes, "it can be unbearable at time. Sadness , loneliness , worry, anxiety, cost, anger and the physical work of caring trying to take care of him. " frightening and frustrating and on and on. Bless you and everyone here who had this burden.

Cuttercat

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I just wrote a post a few weeks ago about an episode when my sister's 'real self'' emerged one morning. It made me cry, because I had almost forgotten that she was 'in there'. Your Charles is 'in there' also .... Your acronym is right on! This disease is like a horror flick about a menace stealing people from their loved ones. Know that we are here - knowing what you are going through.

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sooooo sorry :(

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My heart breaks for you. I sit here watching my husband nap and can totally relate to your sharing although, gratefully, he is not advanced to the stage of your husband. Its so sad when he speaks of wanting to go for a walk or the movies, not realizing he can no longer do those things.

Bless you and may you receive the strength you need.

Hugs,

Liz

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