Missing my hubby: Hey all, I'm still kind of... - PSP Association

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Missing my hubby

Cinnylou
Cinnylou

Hey all, I'm still kind of reeling here. I lost my George this morning to CBD. He was in hospice and had gone into respite care last week to give all of us caregiving for him a much needed break. They called Tuesday morning and I answered thinking they wanted to make sure that I was at the house so transport could bring him home. Instead they said he had a mild fever and had been pocketing the food from his meals in his mouth. He wouldn't/couldn't swallow. They didn't feel it would be safe to keep trying to give him anything by mouth, as he was starting to choke and didn't have the strength to even cough properly. He'd been eating great up until that time--which I know to be true. His lungs were clear, he'd had a decent bowel movement and no change in his urinary habits. They felt they needed to keep him longer to see what was going on. Okay. I told them I'd be up to see him in a bit.

When I got there, he didn't look the same. His eyes were open, but not seeing. He didn't respond to me like I was even there. One of the nurses came in and asked me if he looked different to me. I told her yes. She said that's what she thought too and that the change had taken place a couple days prior. When talking to his best buddy, he said when he'd gone in to visit him on Sunday, he didn't acknowledge him at all, but that he was there when the aid was feeding him and he ate well.

I guess what I was concerned with initially was would this be something he was going to bounce back from and return home...or was it the beginning of the end? Well I got my answer. So I don't know if we were just blessed that he never developed swallowing issues until the very end...or if he just flat out refused to eat or drink because he could feel his time coming to a close and his body just needed to get on about the business of dying.

I've been keeping up with everyone's posts here and it seems like we've lost a lot of loved ones recently. Not going to lie, I was kind of blindsided that I also ended up in that group. I didn't think that we weren't doing that poorly yet. Just goes to show you--we're not in charge.

George was only 62. I remember asking the neurologist how fast these brain diseases progressed. He told us that how fast it starts out is how fast it was going to progress. We knew something wasn't quite right back in 2014-2015, but it was subtle and we couldn't quite put our finger on it. Probable diagnosis came mid 2017 after some crazy, crazy months.

My husband was devout in his Christian faith, but I decided that in lieu of a somber, sad church service that we were going to go rogue and have his celebration of life be in the form of a Bluegrass Music Pickin' with all of our musician friends and family. We will celebrate through song and fellowship. George didn't like to think too far ahead with his illness--took it a day at a time--so we'd never discussed what he would like me to do when he passed. So as he was laying there in his hospital bed last night, I did what I've always done in true wife fashion.I told him what "we" were going to do and I whispered in his ear "guess what I decided to do for your memorial service?" I think he will be pleased.

48 Replies
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Dear Cinnylou,

I am so very sorry for the loss of your dear husband. What a lovely picture of him. He must have loved nature. 62 is so very young. and I assume you are young too.

Your story sounds so much like mine. Sandy died on December 16th and it came on so suddenly. The neurologist had said 2-3 years after swallowing issues so I was always watching for those. He didn't develop serious swallowing issues until his last few days of life. I know that's a blessing. He could eat, talk, and swallow right up until almost the end. The down side of that is that it was such a shock. When he started going, it went fast.

I am glad you are going to have a musical celebration, just what he would want. Try to rest. I'm sure you'll be surrounded by family and friends, which is wonderful. But still try to get some sleep. And if you can't sleep, at least rest.

Blessings to you,

Joy

I'm so sorry to read that you lost George so quickly. I'm glad you planned something different for his celebration of life. What a great way to celebrate his life.

I myself have always wanted one song for sure to be played. Spirit in the Sky by Norman Greenbaum. It was a one hit wonder that I have liked since it first came out. My entire family and a few friends have known I want it played for years before even my first backward fall.

Dear Cinnylou

So very sorry for your loss.

Death of a loved one even when we recognise they have a life limiting condition such as PSP/CBD can be such a shock .

I thought we had another year at least so my husbands ‘ unexpected death’ was a massive shock.

Please look after yourself now this is an exhausting time.

The celebration you are planning sounds wonderful - joyful music to remember your lovely husband .

Love Tippy xx

Sorry to hear. It is a pattern around here of late. I thought l was getting a respite break. Didn’t know it was going to be permanent.

Cinnylou
Cinnylou
in reply to Jeff166

And you and Larry came to mind when that happened with George. I was thinking WTH?!?

Jeff166
Jeff166
in reply to Cinnylou

In hindsight I realized Larry was declining quickly. Had he not gone into respite care I think he only had a few more weeks to live. I excepted when he came home from respite care I would have to work to get him back to where he was when he went in. The only good thing was they made his death as painless as possible. My only regret was I wasn’t there when he died.

Cinnylou
Cinnylou
in reply to Jeff166

I had spent the night at hospice with George and was going to zip home for a shower and change of clothes when his brother and wife came in at 10:00 am to relieve me. I was checking with the hospice nurse to get her opinion on whether she thought I had time to go before George passed. Of course they can’t really know—just a best guess. She figured I’d be safe. Said we had hours to days.

Well the brother and his wife were running a little behind due to traffic. They got there, and naturally, we started yacking. I had just finished putting my shoes on and stood up to get ready to leave and everything started changing with my husband. It was that fast! Had the brother not been late...had we not been talking...I’d have missed being there to witness his transition to the great beyond. I don’t know what he saw near the end, but this poor man whose eyes were glassy and at half mast for days all of a sudden had them open as wide as saucers—like he was in amazement over what he was seeing. I so wished I could see what he saw. All I can say is his changing from this world to the next must have been one hell of a ride! Truth be told, I think I’m a little jealous.

Espink50
Espink50
in reply to Cinnylou

Thankyou for that it gives me hope

It a double edged sword when reflecting aver the death of the one you love who has suffered from one of these horrible diseases, especially if it was unexpected at the time. One is utter sadness and disbelief, the other is relief that they are no longer suffering. It's good that you have taken control of his Farewell arrangements and doing what you know is right for the both of you rather than being told how it's going to be, it will actually give you comfort when you later think of your time together.

Sending much love

Kate xx

Cinnylou
Cinnylou
in reply to Katiebow

Yes, I was kind of taking a poll with my friends asking if they thought it was a tacky thing to do. We live in the south in the USA. Lots of straight-laced church folk will probably be there from George's church. Don't get me wrong, they are wonderful people but if my family is going to travel 1000 miles to attend his send off...I'm sure they're going to want to drink a toast in his honor. That's how we roll where I come from.

Heady
Heady
in reply to Cinnylou

Cinnylou, there is only one way to deal with grief, funerals, celebrations of life, what ever. That's YOUR way. I accept certain family members feelings have to be taken in to account, but at the end of the day, this IS your show, your loved one, your bill!!! (To be blunt) I know you don't want to upset anyone, but what about what you really want, what George would have wanted. This is the only time in your life, that your opinions/needs/wants will be the main thing that matters to most of your family and friends, make the most of it and have the biggest and best celebration for George that you want. Tacky has nothing to do with it, if this is what you want, then it's wonderful and very meaningful, which is what you want for a funeral.

I hope, what ever you plan goes well, just remember it will pass very quickly. Please take your time and soak in every minute. The memory will help you through the dark nights ahead.

Sending big hug and much love

Lots of love

Anne

Have your celebration and make the most of it. I had dreaded my wife's service fearing I wouldn't be able to cope. We had a great day and sailed through it supported by the love of friends. Love & prayers. Ken.

Sending big hug and much love

Lots of love

Anne

So very sorry for your loss, sending hugs xx

I’m so sorry for your loss but may you be comforted knowing George is now free and at peace.

It’s good you know what sort of send off you want to give him and hope in the future when you remember it, you can smile and know he would have approved of the celebration of his life attended by all those who loved him.

XxxX

Hi Cinnylou

I'm thinking of you and send

Lots of love and hugs. Maddy xx

Thank you for your post. I am so VERY sorry. I know we write to help ourselves, but this posting, it particularly struck a chord in me and helped me.

You husband was VERY handsome. It was a great photo.....him and nature.

I lost my son to PSP May 4, 2017. He had barely turned 55 years of age.

His symptoms, back in March, 2014, were DX as Parkinson's. In 2017 re-DX as PSP (but I was negligent in getting a brain autopsy).

My son was a free lance bass player....salsa and especially R&B. For 12 years he was TOTALLY self-supporting as a musician (got his own small bachelor pad on the Westside of Los Angeles). He considered being totally self supporting as both a gift and triumph. He then gave himself permission to get a day job to support his love of playing.

My son, after several bouts of aspiration pneumonia, losing control of all bodily functions and ability to walk without assistance, having a PEG installed, seeing himself going quickly downhill asked that we no longer feed him. He was at home (Los Angeles, CA) under Hospice care from Kaiser Permanente. We all accepted his request.

At his memorial ceremony all his musician buddies came together and played at the afternoon CELEBRATION. The REMEMBRANCE part we did in the morning. I KNOW your husband will be PLEASED with his "celebration of life" memorial service.

The GRIEF part is erratic....what has helped me is old photos and being grateful he was MY son, and that I got to spend all those years hearing and watching his triumphs, along with the disappointments helps me in easing the pain.

I am sorry for your loss.

Margarita, Los Angeles, CA, USA

What a handsome man and clearly a warm happy one . The memorial service is a wonderful idea, a celebration of his life, love and friendship .

Hi Cinnylou!

A big hug.

Thank you for sharing your experiences and feelings.

Luis

Hi Cinnylou,

It sounds as though you have plenty of support and George would have known that, I am sure.

Celebrating a life can be such a wonderful thing and may it continue every day. My husband is failing daily but I feel still has a way to go before he arrives in glory, but I know that is what will be happening for him...one big joyous thank for a life well lived, and for a heart full of love, strength and courage.

My prayers are with you, and may you draw strength from George's faith.

Much love

Juliet x

Thank you for sharing your experience which reflects that of so many, including me. The end is so often a shock and we realise we're not ready.

We also had a musical send off - classical, jazz and folk. It was a wonderful experience, enjoyed by most and a sustaining memory for me.

Big hug from Jean xxx

Hidden
Hidden

I'm so sorry for your loss but I think George probably decided it was time. He didn't want you to go through anymore.

Glad you got to talk to him, he would have heard.

Take care, he's still with you.

Love and hugs

Sue x

Thank you for this. My Esther is at the same stage as your George. You described Esther in George's last days. Esther is still eating and drinking. BMs are regular and she is somewhat alert. Although not responsive. Your story gives me some hope in what the future could hold. My biggest fear is to have to make the decision to feed her through a tube.

CJ

So very sorry for your loss. Wonderful idea for a service... everyone will be pickin' and he'll be a grinnin'. Hugs and prayers.

Tim

I’m so sorry. It’s such a difficult time. You will honor him and he is pleased.

From your post it seems that my Charles had a faster decline as well. On this site you learn things everyday.

Bless you and your family and know you are in my thoughts and prayer

Cuttercat

I’m so sorry for your loss!. What a handsome fellow! Thank you for sharing your story and experiences.

I wonder when we finally take care of ourselves, to give ourselves a break, if maybe our loved ones are waiting to let go? They are probably feeling a sense of peace knowing that you won’t be alone if they pass away in a facility that can help you muddle through the madness of it all. I’m just thinking out loud here, since this has happened to others.

It just goes to show that everyday is a gift worth celebrating. Have a beautiful musical service as I’m sure that it will be.

Sending hugs

Xoxo from I SewBears

Bluegrass.....what a wonderful way to send off someone you love....my favorite music! It is so weird how this disease creeps up on the person and suddenly steals them away....I am doing every thing I can to help my husband, our time line is almost exactly as yours. Did your husband fall frequently? Mine falls quite often 😞 He eats well but not as much as he used to. I am sending my love and prayers.....

what part of the Country are you living?

I am in Florida. And he didn’t have the falling until way later when he was more advanced. His started with speech issues. Then his right arm started to have problems. He did physical therapy. He was sent there to see one of the therapists who was really good with Parkinson’s patients. She was sent info saying that’s what his diagnosis was. She pulled me aside concerned about his eyesight. Nothing registered in his field of vision if he tried to track her pen below waist level. She was tiptoeing around what she discovered as she told me that she didn’t think he had Parkinson’s disease. I told her that we never thought he did. That the neurologist thought it was either PSP or CBD. That poor girl! She was visibly relieved that she wasn’t about to shatter my world that he had something worse than Parkinson’s. Sorry. The neurologist already took care of the shattering. But she worked with him and I think it kept the falling at bay for a long while.

Speech therapy did not help. He also had some dementia with his disease. She’d point at pictures of animals for him to name. He couldn’t remember what they were and if he did, the broken word would come out wrong.

He would lose his bearings in our small house. Couldn’t find what was there in plain sight. I asked him to get me something from the fridge once. We were in the kitchen. He couldn’t see where it was, or it didn’t register that’s what it was?

Totally unable to formulate a plan. I remember when he was mobile that I would have to give him blow by blow instructions because if you told him more than one step at a time—nothing was going to get accomplished.

Then the incontinence started. Probably the worst phase for me. He was wearing adult diapers, but if we went anywhere it was like packing to leave the house with a small child. More diapers? Check. Wipes in case he poops? Check. Is there a family bathroom where we’re going? Because he can’t dress himself anymore.

But we still tried to do things. He loved the movies until he fell down steps in the theater. But what really put the knife in my heart was when we had gone out to eat. I held his hand and walked in to the restaurant. Had to help seat him due to his rigidity. At this point he was still able to feed himself. I ordered. Food came. Halfway through the meal he could no longer feed himself anymore. At all. After that meal. Just like that. I finished feeding both of us. Then I had to hold both his hands and walk backwards with him, guiding him through a crowded restaurant to get out to our truck. I wasn’t embarrassed for me. I felt so bad for him.

And yet, he never complained. Never felt sorry for himself. (Lord knows I did enough complaining for the both of us.)

SewBears
SewBears
in reply to Cinnylou

Cinnylou, sad post but thank you for sharing your experiences. How wonderful to have found a therapist who was clued in on the differences between all of the brain disorders. It sounds like you found a good one!

My husband supposedly has Lewy Body with Parkinsonism traits. However, many things that you’ve mentioned my hubby experiences too.

A Physician’s Assistant recently told me that when a patient doesn’t see what’s right in front of them that it could be because their mind is focused on something else. I’m not sure that I agree with that theory.

I stopped asking my husband for anything. What seems simple to me is mind boggling to my poor hubby. The other night I noticed that we were out of cocktail sauce for a seafood dish that I was in the middle of concocting. While hubby was sitting at the table waiting to be served, I asked him to mix some catsup and red chili sauce together and stir it up. First, he couldn’t physically shake the bottles. Then, he couldn’t push open the lids and lastly, he couldn’t see the dish or the spoon to pour the liquids into them. I watched his movements with fascination and just wondered what in the world has happened to this beautiful man.

We are not at the incontinence stage and I’m hoping that we won’t have to endure that.

Anyway, I just wanted to thank you for your post because the similarities are disturbing yet reassuring if that makes sense 🤷‍♀️

Xoxo from I SewBears

Cinnylou
Cinnylou
in reply to SewBears

Yes ma’am, it all makes sense. It took my hubby 45 minutes to make a simple sandwich one afternoon. He could not formulate the plan necessary to execute the actions needed. And a real kicker that totally nailed his diagnosis for me...I’d read where CBD patients could lose their math and numbers skills. Of course I had to test. Maybe I’m just a weirdo, but while I loved my husband and felt so badly that this disease had a hold of him...at the same time there was this part of me that was really fascinated by the whole science/medical aspect of it all. So I wrote a very simple 2nd grade math problem down. I think it was 22+44=, and to both of our horrors he could not solve it. He always loved math. I only use it to balance my check book. And there he was unable come up with the answer.

And I think the visual/spatial issues kept him from seeing what was right in front of him. He scared himself one day. While he was still mobile and before I felt like he needed someone to watch him he had stepped outside of our house to get something up at our barn. He confessed to me when I got home. He said, “When I went to get back into the house, I looked all over and couldn’t find the door. It just disappeared!” I don’t know how long it took him to finally see it, but I know it unnerved him to the point where he didn’t really leave the house unless someone was home with him.

SewBears
SewBears
in reply to Cinnylou

Yep, same here about math skills. My husband used to be a successful businessman and he was involved in solving other corporations finance issues. My first sign something was wrong was when he could no longer track or pay our bills.

I’m so sorry for your loss. The final stage seems to have come on so very sudden! Oh my gosh! I must live for today. 😢

I recently told a friend if it weren’t for the Potty problems I could endure this a little better 😩

One evening he was standing at the sink brushing his teeth before getting in the shower and he started having diarrhea ,massively, then he turned and walked i it, then the dogs came in....well you can just imagine😖😫 this type of thing has happened several times. He sits in an awkward way on the potty and misses a lot when he pees....also poo. It will be all over the floor and toilet. I got those toilet sets that sit over the toilet and look somewhat like a walker, that has helped.

He can not look down at all...if I talk to him he stares above my head, he can not read or write at....

I have POA for medical but had to get a Durable POA for several financial situations....anyone in this site that has a loved one with early symptoms be sure and get these things done early on to protect your assets and be sure you are the sole person needed for any decisions concerning finances or assets....

I have him enrolled now in Hospice, they have been a wonderful help, also “Home Instead” have come out for any amount of time 2-24 hours. Hospice is covered with Medicare but not Home Instead...albeit anything at home is less than what a facility charges...

I am living from day to day....tomorrow I have HI staying with him for four hours so I can run some errands.

He sleeps a ton he sits in a recliner and sleeps most of the day....this is a man that couldn’t sit still for a second...

Oh my! I had one of those moments. He was standing in front of the bathroom sink butt naked so I could wipe up his poop mess in the back when he lets loose and pisses out the front, all over the sink cabinet. Thankfully we live out in the sticks so no neighbors close by to hear my many expletives. “What the *bleep* do you think you’re doing?!???” I could regale you with my dog moment tale...but I won’t. 🤮🤮🤮

Gotta laugh to keep from crying. Thank God I can find humor in any situation....but maybe not while it’s in process. Lol

Cinnylou and Jubilee Ranch-thanks for sharing the "special issues" that confront those of us caring for brain disorder loved ones. I thought I was alone with my ranting and then feeling guilty -its strangely comforting to know others feel the same. So far those issues are the most difficult for me to cope with. Its not his fault, but it sure brings out the worst response from me-then I say I'm sorry I know its awful for him too.

Yeah...after these episodes/accidents and my rants where you would swear I was demon possessed—head spinning and curse words spewing from my mouth...I would feel bad too. And I did always apologize. I knew he couldn’t help it. Just had to blow off my frustration. So you were never alone, ncgardener799. Somewhere, some other caregiver is ranting and gloving up and getting ready for the sh*t that hit the fan! Lol

Ahhhh CinnyLou, such a hard day for you and you offer support, with a sense of humor!!! You must be a very special person for sure-Thank you!!! Where in Florida are you-we are in South East NC. Transplants from Northern NJ 20 years ago.

I am in north Florida, outside of Jacksonville. Transplanted from Pennsylvania after I married my hubby and we moved down south to try to get custody of his son from his previous marriage. Eventually looking to move back up there. You’d figure I’d have adjusted to the heat after all these years. But I haven’t. They can keep their 95 degrees, 100% humidity days!

Nanny857
Nanny857
in reply to Cinnylou

So sorry for your loss Cinnylou, looks like the angels were looking down and kept you there. I think the idea of celebrating George's life with your family, friends and bluegrass music is a wonderful idea and he will probably be kicking up his heels and smiling down at you all. His photo is lovely, thanks for sharing. Just remember to look after yourself now.

Sending lots of love, Nanny857xx

I'm sure you're using adult diapers now. They're a god sent.

Oh Cinnylou my heart breaks for you...I lost my husband suddenly (not CBD.. a stroke) last February and he never wanted a 'somber' funeral but a 'party'...That's what we did we had a beautiful 'Celebration of Life' at a local golf course and it was wonderful and we celebrated him just the way he wanted!! My sister is on this horrible CBD journey and it's heartbreaking watching her deteriorate...You will be in my thoughts as you celebrate your dear husband....hugs!

Hi Cinnylou

I am so sorry for your loss. My husband was also 62 when PSP took him.

There is nothing I can say to help ease your pain at this time. I know I couldn't find anything when I lost Les in November 2017.

I did find that writing on this forum was, in some way, comforting as so many friends here had kind words and advice.

Sending a massive hug to you

Love

Pat x

Hi CinnyLou, What a beautiful picture of your handsome husband. I am sorry to hear he has passed, but I got chills when I read your post recalling his finally moments. His celebration of life sounds wonderful!!! I'm not sure if we are ever ready to say goodbye no matter how that time arrives. I find it interesting that his Dr said the way the disease arrived is likely the way it will progress.

My Husband has PSP, took 4 years to get a "diagnosis" His progression has been slow-but no way any of us know beyond today what will happen next. Gather you family and friends and celebrate life -then rest and take care of yourself as you grieve and are supported by friends and family. Hugs!!

Cinnylou

I am so sorry for your loss. Thanks for sharing your husbands passing with us. We are all on the same road. Just know you did a great job as a carer and a wife and whatever you do to honor your husband will be the right one. Keep your family and friends close.

Condolences

Dick

I am so sorry for your loss. I think a Bluegrass Pickin' jam would be a great way to celebrate him!

Ron

Dear Cinnylou, I’m sending all my love to you for your loss. What a lovely picture of your husband. We all hope that we have as long as possible, but I know that we have to treat each day as a special moment as we need know when this cruel illness is going to do its worse. You take care and keep in touch. I love the celebration of life, let us know how it all goes. 😘😘 xx

Hi CinnyLou, Thinking of you today-

Thank you so much for sharing your experience. I don't know how far we are in the journey or how far we have to go, but I expect when it comes, it will seem quick. Your post made me think that I need to decide what type of memorial my husband will want. We've talked about funeral arrangements, but nothing more. Maybe they'll be a chance to discuss what he would like when he feels up to sharing that.

Dear Cinnylou,

I'm so very sorry for the loss of your beloved. Having lost my husband after 5 years of CBD, and still not expecting it when it happened, I empathize with much heart.

Your celebration of life sounds beautiful. He looks like a truly lovely man and would no doubt love what you chose

Please take care of yourself - be very good to yourself, and be patient: this grief business takes as long as it takes. Let it..

Hugs for now ❤️❤️❤️

Anne G.

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