After 14+ years of Alzheimer’s Disease Sue caught a chest infection - 5 days later she died peacefully in her Carehome a week ago. The last 6 months were so good after the enforced separation of lockdown (with two near-death episodes due to distress at separation from her routine during that time) and she had responded so well to this release with markedly improved comprehension. So quite a shock. She was 76 - we met and fell in love on my 17th birthday and have had a wonderful life with 3 children etc - much to be thankful for.
I was on my last week of 11mg Pred (Dorset Lady Slow Taper Plan) and doing well. Been a bit achy since Sue was taken ill so decided further reduction might not be too clever. Question: with what will be a sizeable funeral to arrange etc etc do I wait and see if the little ache gets worse and then respond with a couple of extra mg - or might it be better to go up to 12mg for a while as precaution? (I am fairly certain that the stress of the Altzheimers Disease years is what made me ripe for PMR.)
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Hopingsail
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So sorry to hear about your wife…my sincere condolences to you and all your family .💐
With what’s ahead, I would go back up to 12mg at the very least immediately and see what happens, certainly don’t stay at current dose, it will invariably get worse…
..but you may find that temporarily you need a little more. If you do, then take it…. as I said it will only be temporary, and you need to be as well as possible to cope with everything over the next few weeks.
Hopefully your children will help as much as possible, but there is still a lot that falls on your shoulders alone…but you know that from your experience, but it is different when it happens to you…as many of us know.
I’m so very sorry for the loss of your wife RIP it must be a very difficult time for you. Certainly it’s not a time to continue your reduction & extra Pred maybe necessary to help you deal with the funeral & all the other necessary tasks.
I'm so sorry - I know exactly where you are since my husband died just 3 weeks ago.
I needed more pred in the last month or so which were hard as he was ill at home with almost no practical support available because of Covid - but I have already been able to go down a bit since the stress of the unknown went away and the physical stress was relieved. I didn't have anything to arrange though as there was no point having a funeral here since no-one could really travel even if they wanted to. We will have a party next summer all being well and decide how to deal with the ashes longterm.
We too had had just over a month of far better quality life than was possible since Covid so the sudden decline - more like a plunge off a cliff - was a bit surprising though not really unexpected. There is that to remember though, along with the over 50 years of memories since we met at Uni.
You don't need to reduce just now - and if you need a week or two of a bit more, don't procrastinate.
I am so sorry to hear that your husband has just died also…. and that no funeral was practicable also. Such an awful collateral effect of Covid….My heart goes out to you for all the caring you have sustained in this forum despite your caring and loss. Thank you for all you do. X
So very very sorry to hear that your husband died and at such an awful time with covid. I know how you feel I lost a dear sister in January but a partner of all those years must be particularily painful. Hope you are looking after yourself after all your caring of late.You are in my thoughts and prayers.
I didn’t know I’m so sorry I missed that important post. I have posted part of a poem by Brian Patten in reply to Hopingsail that I found a comfort when I lost my lovely brother aged 48 in 1997.
Whilst you all started off as names on a page over the 5 months I have been here I have been in awe of the strength and wisdom that I see here in you all. It’s so appreciated that even during a difficult time you can still support others. You are amazing in my book.
I am so very sorry to read this. It can still be devastating even when it is expected. I have a vague idea that you ski in winter, so I hope you may have plenty of opportunity to get out and do this over the coming months as a salve you will surely need.
No longer I fear - gave up a few years ago, long before Covid but there was no skiing last year and that would probably have led to me stopping at my age! It is fine as long as you do it every year but you lose condition very quickly and that's what happened when I did stop. If Covid calms down I may get the regional mobility card and take the bus to to the ski villages in the mountains and watch
I am so very sorry for your loss of your lovely wife. I truly hope that you are consoled to some extent by the fact that Sue's last months were more peaceful for her but I know this doesn't lessen the shock.
Be kind to yourself now, take the advice given regarding prednisolone and I'm sure that with the help of your supportive family funeral plans will come together with one step at a time.
Having looked after my mum through frontal lobe dementia I can fully empathise with some of what you have gone through. It is a very cruel disease. I expect that you feel shell shocked. You have my sympathy, love and hugs for the place you are in today. I am glad that you had so much happy life together! The life so many yearn for, since you were not much more than children.I agree that caring for a loved one with Alzheimer’s disease could be a precipitating factor for PMR. It was for me too even without the agony of lockdown and Covid . I agree with DorsetLady and would go up to 12. Don’t give those niggles time to bloom into a flare. I did find planning my mum’s funeral deeply comforting ,over time it became a happy place where my mind could go - especially the music. 🌹
So sorry to read if your loss. Heartfelt condolences. The weeks ahead will not be easy, and certainly not a time to taper. More likely to go the other way. Increase as others have said and be prepared to go up a bit more if needs be. Pls take care of yourself and use whatever support is available.
"Death May End A Life, But It Cannot End A Relationship"!So sorry for the loss of your wife Hopingsail. Sending you my sincerest condolences and much love. Xxx
Sending you much sympathy on losing your lovely Sue. The photo you've used on the forum says everything about your love and devotion to each other. From another Sue 🌼
I’m so pleased that you were able to see each other a bit more and have some better times as pandemic regulations eased. Look after yourself and as others have said, perhaps increase the pred slightly in the short term - certainly don’t worry about reducing it at the moment.
So very sorry to hear this. My husband died 25 years ago today, and that day is still etched on my memory in every detail. Please accept deep sympathy for you and all the family.
So sorry to hear that you have lost your wife. Nobody can really find the words to express what you are going through at the moment. Dorset Lady and others have given you good advice regarding the steroids. Please accept my deepest sympathy and I hope that, at least, you will find a good steroid regime that will take away the physical pain. My very best wishes.
So sorry to here of your loss it must be a difficult time for you. Nothing to add to the advice already given. My deepest sympathy for you and the family.
Dear Hopingsail, we all reach out to you from this wonderful forum with all the support and love in the world. May you feel our comfort like a warm blanket around you........
So sorry for your loss. What a wonderful lot of memories you will have (both good and not so good) being together for so long. Not the same as the physical presence but maybe you have managed to come to terms with that already over your wife’s illness so now you will be free to remember and celebrate your life together. My thoughts are with you.
So sorry for you loss. In truth this is your second loss as dementia robs us of the person we once knew. Thankfully you have all those years of happiness to remember. Be gentle on yourself and make sure you take time to care for yourself xxx
I’m so very sorry to hear of your sad loss.Yes a big funeral will cause your stress levels to go up and then a knock on effect will not help with PMR/GCA. Why don’t you double the dose for a few days and then revert back to normal dose once you have got through the funeral.
So very sorry to hear about you wife. Deep sympathy. What a gift to have had her since you were 17 even if the end was sad. I don't know how to advise on the funeral. Part feels you need to get back on your feet - perhaps a celebration of life later; part feels perhaps you feel you need to do something now for closure. Wishing you well whatever you decide. God bless. Jane
Very sorry to hear this Hopingsail. I lost my wife to Alzheimer's in May last year, 11 years after she was diagnosed and over 6½ years since moving into the care home. I had been visiting her for 2 or 3 hours every day, feeding her lunch. That was brought to a sudden stop in March 2020 with the advent of lockdown. She had very little cognition left but would sometimes react to my presence with chuckles and she did this over Skype a couple of weeks before she died. Like you, I have come to wonder whether the stresses of those 11 years had stoked up PMR; mine was triggered in Jan 2021 after my first AZ jab.
Hopingsail. So sorry to hear about the passing of your dear wife Sue. Sincere condolences for your loss to you and the family. Words seem so inadequate at this. Think of you.
So sorry to hear about the loss of your beautiful wife. May she rest in eternal peace. Such a wonderful, long time you were together, a rarity today. Wishing you strength to keep your PMR in control.
I'm thankful that she passed peacefully and the last months were really good ones. May your memories of many years sustain you. I'm sure many a smile will creep across your face. My prayers are with you and your family. I'd say you've gotten some excellent advice to help you be as comfortable as possible. Be well....
I'm very sorry to hear this. My mother struggled for 24 plus years with Alzheimers and it was a slow, difficult process which, I think, helped cause my PMR. My own husband is gravely ill and with all that goes with that (nursing, et al) I am also sticking to my 6mg pred daily as now it is far too stressful to attempt to lower the dose. Prayers and hugs to you and to PMR Pro and anyone who has suffered such a difficult loss.
Oh thank you but my mother has long since passed, thankfully before she was at the "end stage". She was happy to the last so I feel we were blessed despite everything that went on with her decline. Yes, now the hubby, he is another matter. Necrotising pancreatitis, but I'm hopeful he is on the mend.
Thats very nice, Canary / Ruth. I'm doing OK thanks - Service arranged for Monday 6th 1230 at St Faiths Church in Havant - all planned and with the printer, and the After-Party (aka Wake is booked). I have drafted my Address and its with a daughter to check! Been very busy but I took advice and upped Pred to 12 and feel OK so far... Main anxiety now re the Omnicrom: 100 friends and family booked in for the occasion from all over the country and shall be disappointed if that number gets forbidden or folks cancel.. though that would be understandable. Our Church is well setup for tech though so people can watch on line - but they'll have to provide their own Champagne! (I intend to send her out with a good party - we always loved entertaining!)How are things with you? Did the Worthing job settle down?
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Advice needed please for my mum!
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