PSP Association
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CBD - getting off the rollercoaster

Hi all you wonderful people who contribute to this site! My lovely man found his way off the rollercoaster today and lost his battle with CBD or whatever brain disease he had. We celabrated together on our 50th wedding anniversary with a minuscule bit of cake for him, and lots of anticipation throughout the week as I put up old photos and the cards that had arrived. I bought him a card for him to give to me and he managed to leave a small mark inside it with a pen. I read out the one I had for him about all the usual things husbands do that annoy their wives, like leaving up the toilet seat and fiddling with TV remote, the usual sentiments I got in a card for him. The one I chose for him to give to me was full of love and forever, just like his usual ones to me. He spent most of the day asleep and I spent most of it with him, and our oldest son and his wife joined us and we drank lemonade and ate chips and dip and cake. Another son found the cake and I added decorations I kept from the 40th, along with champagne bottle shaped candles and gold candles as I had no time to find a 50.

He was developing aspiration pneumonia at the time and the doctor was consulted by phone as it was weekend. When she had made her examination only a week ago on his arrival, I had quietly remarked to her that what she saw was probably the best he would be. But never did I think he would leave me so quickly!

The pneumonia came about I think because I fed him and it went down the wrong way. His swallowing seemed to get increasingly difficult and gulpy in the week before we left hospital. It was aggravated by a gentle nurse who obviously had not struck CBD before and was in denial of the dramatic change in his new patient over only a few days. He gave my man his meds with apple sauce and did not wait long enough for him to swallow before he added an extra chaser of another teaspoon of apple sauce. In days following, I warned all who gave him thickened fluids to wait for him to swallow and frequently the liquid remained in his mouth without him managing to swallow. He seemed to have lost that ability somewhere along the way, no matter what position he was in.

In all, it was not unanticipated! But the speed was shocking!

Now his suffering is at an end, I have one redundant POA I fought to get in place - and which he signed illegibly a week ago; and a redundant 28 page form to claim a financial subsidy from the government - which I believe I no longer need to fill in, as all will be sorted by his death! He would be so pleased to know he has won the paper war!

My lessons learned. Take time to smell the roses, the herbs, but not the wasp nests! Live each day as if it is your last together! Fight for knowledge of these beastly diseases to be recognised by all doctors so that can diagnose earlier and give others some small chance to try treatments to stave off, or hold back, its progression; and God willing, some specialists will find a way of slowing progression, or stopping it! As they seem to be beginning to in the research mentioned in the Scientific American!

I know you all know this! I don't think it is something I will stop looking for, but I have a few other bits of 'unfinished business' I have to deal with before I can get back to this site again. Thank you for your prayers and support, and above all for your friendship circle around the world!

I hope that my posts and comments are of use to other CBD sufferers and their carers, and that they assist you all to plan, for the most part, ahead of the advances. The experience of each sufferer is likely to be different, but beware all of you of the speed at which it may progress and get help to put legal processes in place while you are able, and any other essentials for your care. This means recognising and accepting what is happening, and not ignoring the progression, however slow or fast it may seem.

Love you all! Thank you for words of wisdom and support along our way. Will keep a watch for your joys and sorrows! And I will spread the word!

Hugs to you all!

Jen xxx

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Honjen43 so sorry to hear this sad news, so happy for you being able to spend the last evening together, at home sending you a big hug, once you have finished your unfinished business, and you feel strong enough, you will still post on the site, to let us now you are coping, in your own way, at your own pace, your husband will rest in peace away from the horrible disease. Yvonne xxxx

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What a beautiful and courageous post. I am so sorry for your loss, and thank you for sharing your experience and wise thoughts at this sad time. Love and peace, Ec

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i agree ec

lol jill

xxxx

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Thinking if you with love, you did your absolute best for him and he will have known that, that's all any of us can do. He is at peace and free from this awful disease, now it's time to take care of yourself, keep posting so we all know how you are....😘

Pat xx

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i agree pat

lo jill

xxx

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I'm so sorry to hear this, truly heartbreaking

My thoughts are with you

Your post was extremely brave and totally heartfelt

Sending you lots of strength for your future

❤️ X

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And we all thank you for sharing your journey with us. Love to you and your family and happy landings to your lovely man x

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What a lovely way to describe the way your man left you....getting off the roller coaster. It is such a heart felt post. It must be comforting to know you managed to 'celebrate" your 50 years together. My prayer is that you find peace during the next few difficult weeks/months and that you also find there is life after PSP.

With my prayers, love and a great big hug.

X

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Hi, I am really sorry for the passing of your husband. May he finally rest in peace, away from this evil disease. Now it's your turn, to use your skills you have learnt along the way, in looking after yourself. CBD may have won the war with your man, don't let it win this final battle you now face, learning to live life without him. There will be a life out there for you, when you are ready to find it. Please remember, it still will be one day at a time. Grief is a personal thing, there is only one way to do it, that's YOUR WAY!!!

Sending very large hug and lots of love

Heady

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So sorry for your loss much love xx

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Dear Honjen43 I am so very sorry for your loss, I am so glad you were able to spend the last days with him, just know we are all thinking of you and wish you the best. Many Blessing to you. Nettie

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Honjen, I am sorry for your loss.

Husband, congratulations. You gave your wife exactly 50 married years, and though you probably drove her nuts, she wouldn't have had it any other way.....Both of you were bold and strong in this disease and that your children were there to send you on your way, shows that you were wonderful parents . Goodbye lovely man. May your wife be comforted knowing that you are resting in peace.

AVB

He heals the broken in heart and binds up their wounds.

Psalm 147:3

He who overcomes, I will grant to him to sit down with Me on My throne as I also overcame and sat down with my Father on His Throne. Revelation 3:21

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Thank you AVB abirke . You hit the nail on the head there! He frequently drove me nuts! But you know, I now realize that was partly my fault! These past few months when I held myself back from negative remarks cos he had not done something, made me realize I could have been more forgiving throughout our life together! Latterly we had a very peaceful period simply because I accepted that if something was not up to my expectation, it was my fault because I was the only one able to do things - so said nothing, except to myself!! Took me 50 married years to find that out! And our past few months were happy because of this and because I gave my time 100% to fighting his battles and put my activities on hold. Not a totally bad period to look back on. I am not beating myself up, just thankful I recognized it in time!

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Good for you HJ, I find the more weak I am the more It's B's fault. When I am healthy, I just look for a solution without the blame. I want to face B's death with no regrets; with no "If I ONly....". B is losing strength daily but I know that he is much stronger than many on this site. So I believe I have many years left to help B be happy and make sure I am too...or at least that I am in a good place mentally and spiritually.

You haven't been on here very long but you know you have a family here so say hi when you want...we'll still be here....

AVB

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Have just skimmed thru your posts and put you together, AVB! Life is like that!

By putting our progress on this site we give others the knowledge of what to look for, ways of dealing with it, and learning what to expect next. I have documented my man's progression thru CBD. PSP seems to be slower but stages will no doubt be similar - and no doubt similar to a brain tumour or any other brain disruption. Main difference would seem to be timing.

By knowing the progress and judging its time period, it may give us an indication of speed towards end of life. Thus we, the carers, are more prepared than the medical staff, and can alert them so as to get best care for our loved ones.

I picked my man's reduced swallowing ability long before they did. At first it was noisy, bit like when you swallow a big gulp of air. Which he was as I would give him very small spoonsful of everything. Nurses feeding rather less delicate, and he seemed to handle it most of the time. Until the apple sauce and thickened water time - when he did not actually swallow at all. That was the crucial time and I did warn the staff and they took note.

Am certain there was no time for a PEG tube for him!

I hope you have a happy rest of your lives with B. He must be so much stronger than my man was to be able to have the procedure. So no doubt you have more time! Just watch and mark progression and judge from past timeline and you may be able to anticipate - and call for action and be prepared!

This site has been a godsend, and an obsession, and seems it remains so! Must get out of my PJ's now abirke

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This site is a God send.....You know last summer, my son spent 3 months in NZ. He and his friend walked or rode on bus , maybe hitchiked.....idk but they went from northern New Zealand down to the south. They spent time at difft ppls places and worked there for a week or two for room and board....pretty cool....I should do that....open my house up ....not hitch hike though in my youth that was the only way I went. And who knows maybe one of these days I'll hitchike up to Canada. but New Zealand is beautiful....I could see my son going back there and stayin....Well it must be tomorrow there by now. it's still yesterday here....got about 15 more minutes to go...I think I'll go get my pjs on!

Goodnight

AVB

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Suggest you stay 'mum' about the work if he did not have a work permit!! Even working for bed and board considered not allowed! So pleased he had a great trip. It IS a lovely place. Lot more brits coming at moment.

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Oh My! I don't know if he had a permit...I know he used internet to make contact but ok I won't tell if you won't tell...

(:>x)

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Probably not!! Lots of them don't! Seems a lovely way to bum around a country! No I won't!

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honjen43,

I too am learning that I must accept things that are not up to my expectations. It is a different way of coping and handling things that stress me and my husband, which doesn't need to be. The little things that happen, the changes that come. When I see those differences I know the CBD is rearing it's ugly head and letting me know that it's still there.

I love what you said, 'take time to smell the roses, the herbs, but not the wasp'! You made me smile through my tears. We have just started the road with Hospice. I have needed assistance for a while now and need that respite as it has become harder for me physically to take care of him 24/7. But even without, I would.

Take care of yourself, do what the others have said, grieve at your own pace, take this time for you! Your husband would tell you to do the same after all the care you gave to him.

Thinking of you,

Valerie in Virginia

He who overcomes, I will grant to him to sit down with Me on My throne as I also overcame and sat down with my Father on His Throne.

Revelation 3:21

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Dear Honjen43

I am so sorry to hear of your loss and thank you for your post, which must have been difficult to write at this sad time.

Sending you my loving thoughts and wishing you well for the future.

DenB X

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Dear Honjen,

Your courage shines between each line of your heartwarming note. God Bless you and yours and may the spirit of your beloved stay with you always, protect and bring you peace.

Deepest Sympathy, Rita (NOTEASYRC)

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So very sorry for the loss of your husband. May God comfort you and your family in the coming days. You definitely fought the good fight.

Love and peace,

Ketchupman

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What a beautiful post. I can feel all the emotions coming through each word.

Sending you much love and hugs. You both sound like very special people who shared such love and devotion.

Xxx

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Definitely not all the time! But last few months were a bonus!

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So sorry for your loss, thinking of you

Much love xx

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Sorry for your loss but I appreciate your up-lifting post. Such a warm , lovely way to spend the last hours together.

Take care and keep in touch,

love and a big hug, Jean x

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i agree jeran

lol jill

zzxxxx

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I am very sorry to learn of your loss but at least he is now at peace. Thank you for finding time and words for those who are still on this journey.

Peace be with you and your family

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Dear Honeyjen, so sorry for the loss of your lovely man. Thank you for being so brave in writing your post and for your advice to us, something I must adhere to. May you find strength and comfort in the days that lie ahead, and please 'drop in' and let us know how you're getting on. Lots of love, Nanny857 xx

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Thanks for great advice, I know certain things need to be organised and discussed in relation to the end of suffering but I have been putting it off and in the too hard, to emotional basket, your post has made me realise I need to do this too and I hope other do as well

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Courage, Sharli . Do what you know needs to be done! I find it takes a while to relax again. Even now there are things I need to put into action. But plan a break to happen afterwards when you can reflect on life's ups and downs, and its curveballs! In the end, we have to live with our joy and sorrow, but I have already learned that if you have done all that can humanly be done while your loved one is alive, then you can have some peace of mind when you look back as there is nothing that has been left undone!

I now wait for that time when I can relax! I just hurt! And in those times, friends, contacts and relatives are wonderful and supportive!

Make those decisions well. Take care! Jen

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Thank you Jen for sensible and great advice x

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I just reread this post, honjen, and still admire it and you. I hope you are taking care of yourself. Ec

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Hanging in there EC easterncedar ! Am keeping busy with things that need to be done - and trying not to leave them half finished! Hope to make some real progress this week with finally word that death certificate has arrived at the undertakers. Oh, and so have my mans ashes - she had forgotten about them!!!

Still waiting for lawyer to talk to me about the Will! Maybe after I have seen my money manager, and talked to a few more people, I can take the lawyers on! And still waiting for the final account from the Resthome! Happy to wait for them to get in touch with me!

Have another counselling session this week. Was helpful last week but ladies in black with pink hair and somewhat younger than me don't seem to give me the answers I am searching for just now.

There are still times when I feel I need help, but then my girl friend rings me to see how I am. She lost her husband just over a year ago and we talk to each other - heaps!

So life goes on but some important people seem happy to believe I dont exist any more! Will get on my high horse and do battle soon - then ride out of town for a few weeks. Planning a trip to Rarotonga! Missed out last year with my man as I broke my wrist and wasn't allowed to fly as planned!

Hugs and XXX Jen

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Dear honjen43 and all,

My goodness!

Kevin and I have only just seen this thread.

Jen, how wonderfully you write, still giving to others when facing so much loss.

We read this remarkable thread together out loud. So much care, warmth and good advice here from you and all.

Our hearts go out to you.

Love

Liz and Kevin

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Peace be with you Honjen, so sorry for your loss. 50 years is a long time to be together, it must be like losing a part of yourself.

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Thanks Donnasue1. Yes, it is, but we were not soulmates. We had parts of our life that were separate. He was a stay at home. I went out. We both loved jazz - but he could not dance but we went anyway - together!

Never the less, I miss his presence in little things and have become more reclusive - which was never a part of me before!

Am now beginning to explore life again and make safe excusions by coach. Have also recently booked a cruiise on my own!! Not to warmth and sunshine, but to the Fiordland area of New Zealand in July. It will be cold and muddy (not my fave situation), but have been promised fresh fish and stunning photos! Hope I can get out of the airport as fog is not unusual at this time of the year. And it's on my bucket list!

So life does begin again!

Hugs

Jen xxx

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