Hello
My lovely husband is 86 and I am 12 yrs younger and we’ve done really well with the alz and mixed dementia and he’s had finasteride for enlarged prostate for 8 years roughly .
So in Nov the PSA was doubling and although we’d agreed no invasive treatments due to the alz we couldn’t just do nothing so I have POA but with his understanding and consent in the moment , he’s now forgotten of course …. we started hormone treatment in february. How horrible to think the treatment for prostate expedites the alz. But what else can we do !
I have a telephone consultation with his urologist this morning and I’m calm but frantic at the same time .
I’ve only just enrolled on the email support but after introducing myself on here i’m off to read a piece i noticed about how to speak with medics so that should help me with the telephone call . It was my choice not to drag us into clinic for face to face as it’s all so distressing to go to hospitals if we can possibly not do so . Now i’m anxious about the call but he won’t be involved ashe won’t remember anyway but i thought i’d record what the consultant says ( I’ll ask permission) and then go through it with him .
Any insights will really help me . I feel i’ve been in the darkest places trying to support him and it just gets deeper! He’s so confused and melancholic and keeps asking why he’s so tired …. I loath the fact of the HT but maybe it’ll do its job and slow the cancer .,His PSA was 4 last June and doubled now to 43. in January
Hi Outinthecold , so sorry to hear that you are not getting support from loved ones and that you have been on your own. Brian (Millibob ) has signed you to some support areas, but don’t forget, you have us as well. If it’s just a moan or any questions the amazing group on here will help you if they can.
I can’t imagine the combination of dementia and cancer, but HT is definitely the way to go. Prostate cancer is very slow growing and the HT will hopefully work for years holding down progression. I have been on HT for 8 years so far. I am not medically trained but my gut feel is to stay with the HT, as the benefits out way the disadvantages. If you feel it isn’t helping in 6/12 months then review but don’t make a snap decision while you are still at a low ebb. Good luck, David
Best wishes, David
Please remember that I am not medically trained and the above are my personal views.
Good morning Outinthecold
sorry your floundering . BUT. There is help out there . Contact your local Maggie Centre as we found them really supportive. Both on the early days and now as we still stress about the future .
contact your local alliance practice and ask for support or additional support . You need time to yourself too as it’s very important to allow you to get your head round everything .
huge hugs
Liz & OH xxx
Thanks so much , yes you’re right for me/us to not make snap decisions and that’s why i put out a call for help on here and to the medics so i could get my head round things and i am doing! i feel bit better
Thanks Brian
i did ring the support line and it was a fantastic . I will keep going with it and was given the meditation app which i haven’t got to yet but i told Deborah ? about us doing a meditation on line and i was so happy with the difference i felt to do that together so i’ll get going with that too . I’ve devoted 6 years to this dementia stuff and done really well but i’m daunted by this …. however I’ll get there. I’m having counselling for my anxiety so that’s good too . Thankyou for this support . i need to get to grips with the cancer side and make sure I’m doing enough on that!
cheers
Helen
Hi, I can't really give any advice but just wanted to sympathise with you. My OH was diagnosed with stage 4, four years ago this summer. He has been on HT but this is now not as effective as the psa is creeping up and last test was 31. His cancer has spread to some of his bones too but we don't know if the metastasis is progressing until we get a full body scan. He has a telecon appointment with his oncologist end of April but I have been pushing for an MRI as there will be nothing to discuss as he cannot have chemo or radiotherapy (due to heart problems) and after a short course of Bicalutamide, that didn't bring down his psa count either. At least if he has an MRI, we can see if the bone lesions have shrunk or grown and if it is progressing.
To top this, he had a stroke last August and was diagnosed with vascular dementia last September, so I understand your situation. He is not as bad, from what you describe, as your husband with general understanding, but I do have to take charge at his appointments when I can get him there. If he is asked a question, he just tends to look at me for the answer, or he just does not understand foreign accents. He is now going to a Dementia Day Care centre once a week and this seems to be giving him some stimulation rather than just sitting staring at the tv all day. Do you think that there is a connection between the HT and dementia?
Gina
Hello Helen (Outinthecold)
I know it's hard, but you are doing well in dealing with everything.
We are here for you with any questions you have about Prostate Cancer but on top of that we are here for you too - if you want a rant, a chat or just a break - we are all here for you.
Remember to look after yourself too and try not to take too much on at once.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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Thanks Sids mum
I only know that the Hormone therapy causes side effects such as more fatigue and confusion that he gets anyway from the alz. i don’t know about links but im enquiring .
That’s good about his day care, my lovely chap is great in company and sociable but gets exhausted . Short interaction he does SO WELL but the HT is knocking him back .
He gets 4 hours at an older persons lunch club but he fell last week and I believe HT makes you more unsteady?
We also go to a memory art class for an hour a week but otherwise it’s me finding things to get him away from tv. i use music as a distraction … iplayer and Spotify is brilliant for that
Today he’s at the lunch club, going to get him now , that few hours is the only time i’m home alone and it’s so nice.
Coming straight home to meet the locksmith as patio door keys have mysteriously gone missing. I go in panic mode when i see him “sorting” keys
You have to laugh x
Hi Outinthecold,
I dont have an awful lot of advice Im sorry, my message to you is one of solidarity ️ I am caring for my Dad, who has prostate cancer and advanced vascular dementia(dementia for around 6 years, prostate cancer around 9 months)
I really feel for you, the dementia is hard enough on its own and to add prostate cancer as well seems especially cruel.
My Dad is almost 76 and has many other health issues that pretty virtually exclude any treatments, so the plan is watchful waiting with a view to keeping him comfortable if/when he becomes symptomatic. His only symptoms so far have been weight loss and lethargy/ sleeping a lot but there is crossover with the dementia there.
Im sorry you have little support too, I too am the only one looking after Dad and its tough to shoulder all by yourself, very lonely.
I can highly recommend the Admiral Nurse service and this forum too. Sending love and wishing you strength in this difficult time ️
Thought i’d check in here to thank you for your great support …it’s really tough to make the cancer diagnosis ( confirmed stage 4 now and sticking with the HR… ) our main focus when you can’t see what’s going on for him … no pain yet and micturition has all settled down … when what i’m dealing with is the alz stuff ALL the time ! The changed lock was £125 and the key will reappear soon i just know.
I couldn’t get into the NATIA app but i’ll try again and have had Admiral Nurse support today . He’s so lovely but has just asked about my mum (she died in 2004) and is currently looking for the nonexistent cat and dog.
I’ll come back here when we know the PSA and spoken to the clinic … so good luck all of you and I’ll be back !
Helen
We used to play hide and seek at my mum's. Dad had alz and then later mum had vascular dementia, after he had passed. They only lived just over a mile away and I constantly got phone calls to say "dad has lost his magnifying reader" or something else which had gone missing. I would drop what I was doing, pop round and nine times out of ten, find it straight away. Luckily, they weren't very mobile so I never had a problem with them wandering but there were all sorts of occasions which could either make me laugh or cry. I regularly made their evening meal before we finally got more care in, and one day went into the garage where the freezer was, to find dad had switched it off !!! Being Scottish, he liked to switch everything off to save money . We also had to look for the cat which had slept on my mum's head all night, or the lodger who used to come in every night and use the spare room!! At least he was tidy because when we went to look for him, he had strangely left it exactly as it was the night before
. As you probably know, it is so very real to them and telling them they are wrong, doesn't work and makes them angry.
A couple of night's ago, apparently we were living in Spain and he was asking whether my daughter was going to be flying over to see us. When I explained the house was exactly the same as the one we have been living in for 46 years, he just told me that they had reproduced it to look the same. Who the hell they are I still haven't a clue .
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