This topic contains 16 replies, has 9 voices, and was last updated by 
gina45 13 years, 3 months ago.
Hi
My 82 year old dad lives in a nursing home as he suffered from strokes and seizures in his late 70s which left him immobile, incontinent and confused. Usually he's in good health although his mind is fading and his ability to communicate is now impaired so much that he can only manage a few words here and there. He does suffer a lot with urine infections though.
A couple of weeks ago he had another suspected stroke or seizure and was admitted to hospital having knocked his head. He was so poorly, so tired and asleep most of the time, his head had been bleeding and his arms were pretty bruised. His post seizure period can be prolonged, and each one seems to take a little more of him. It took almost 2 weeks for him to recover but it isn't a full recovery. He's a poor shell of my dad.
His consultant called me last night to give me an update on his treatment as he was supposed to be discharged back into his home on Saturday, but they decided to keep him till Monday to do a scan. They also did some tests as he'd been anaemic and they'd given him blood, but a new blood test showed that cell counts for red, white cells and platelets were all low. He explained that they were looking now at myeloma but felt dad was too frail to do a bone marrow test on. They're going to look at blood and urine for paraproteins.
I'm lost. I don't know how to feel. When the consultant called he said it was nothing to worry about, but how can I not worry! Dad is so frail anyway how can he fight something else? He said something about it being another background health issue that we'd have to balance, but to me there is nothing background about cancer. It's that word isn't it. Turns your blood to ice water. I stumbled on this site today whilst searching for some info that may give me hope. And I've read some inspirational stories and some that make me feel so sad and put things into perspective for me. Some very young people on here affected in some way. It's been so useful and I feel like I can see glimpses of hope that it is a manageable disease. For my poor old dad, all I want is that he not be in pain. I doubt that he is really aware of what is going on around him. It's hard to read outcomes and statistics and make any meaning of it for someone who is seems to be getting closer to the end of his journey anyway, but I'm so torn between the desire not to put him through anything distressing for him, and the fear that perhaps some of what I am seeing is the myeloma and by not treating him, we're depriving him of some relief. I read hope and fear into every little sign. His bruises are healing well, his kidneys although "dry" when admitted are working fine but he has an ear infection now and his ankles seemed to be causing him some discomfort….I see signs everywhere!
Does anyone else have experience of myeloma in such a frail elderly patient? I guess what I am really hoping to hear is that there are drugs that can control the pain and spread and give him some relief and time without making him sicker.
Dear Pam
I'm so sorry you and your family are having such a distressing time with the potential diagnoses of your father. I do hope that someone on the site will be able to answer your specific question, but I wanted to point out that not everyone with myeloma needs immediate treatment, so it may be possible that it will just be the results of myeloma that will need attention. I do hope and pray so because your father obviously has enough to cope with.
With all good wishes.
Mavis
Hi Pam so sorry your dad is having such a rough time , it must be awful for you watching him go through it . It sounds as if your dad is being well cared for in hospital which must give you some peace of mind If it does turn out to be myeloma I am sure they will be able to manage treatment to suit your dads health , they wont give him the strong drugs unless they are sure he can cope The majority of us who have pain associated with myeloma due to bone damage , hopefully they have caught your dad early and there wont be any extensive bone damage If he does have pain there are lots of pain relief drugs that can be used its a case of finding which one suits him. Try not to worry too much myeloma is much more manageable now with lots of treatments available and you will be able to talk to the doctors about your concern regarding your dads treatment being too much .I hope you get some results soon and if it is myeloma just take things a day at a time If you need support there there are lots of lovely people on here only too willing to help Good luck to your dad and you Bridget
Hi Pam
Am sorry your Dad is having problems and might have MM.
Your Dad will be treated for his illness whith his other ailments in mind, bearing in mind your Dads Pain there is loads of pain relief that can be given to help its just finding the one that works best with little side effects.
Love and Hugs sent to you all.
Tom "Onwards and Upwards" xxx
Hi Pam
I can´t add any more to the comments you have already received. Just wanted to say how sorry I am that you are going through this awful time and wish you all well in the weeks to come.
Very best wishes
Carol xxx
Not sure if I've had good news or not. Dad's bone scan is back and was negative for any signs of myeloma.
His blood and urine tests aren't back yet but the nurse said they were with the Haematologist which suggests there is something, and also that they were testing because something had already shown up in the urine. He's eating and drinking but looks terrible. Nurse said she thought he was doing ok and to try not to worry.
Thank you all for your support, it is appreciated especially since you all have so much to deal with as it is.
Hi Pam
It must be good news that the MM isn't in your Dad's bones as this is what causes everyon with it so much pain, and because of your Dad's other difficulties would be very difficult to get under control.
I do hope that when the Haematologist looks at his other results they can find some treatment for any symptons without going down the route of chemotherepy drugs.
Love and prayers.
Mavis
Thank you all for your supportive replies.
I am home from a break from sitting at dad's bedside in his care home. He was discharged last Monday after the blood and urine tests showed that he did indeed have levels of paraprotein but in "insignificant" quantities. However without the biopsy the doctor could not diagnose myeloma and we were advised to continue as before but to monitor for infection.
My sister came back from her holiday on Sunday and thank goodness she did. Dad's condition has deteriorated so quickly and he is not long for this world. He is comfortable, settled but not eating or drinking and as we're taking this break, his carers are taking it in turns to sit with him so they can call us when it is imminent, suggesting it could be tonight.
My time in your world was brief but very scary. I was amazed at some of your stories and my heart goes out to each and every one of you touched by this illness. And my admiration for dealing with it as well as you do. I wish you all well on your journeys.
Pam xx
Hello Pam
What a sad time for you, no matter what he has or how long, hold his hand, he has and will know he is loved,
Helen
I am sure that your Dad's medical team will make sure he has no pain. My Dad died quite a few years ago at 75 I was told at the time that "pain is not allowed on this ward" and I was very grateful to hear that.
Very best wishes from Gill
Just a brief note to let those of you who have been kind enough to offer me some words of support that Dad passed away at 12:40am on Saturday 6th. He was wonderful. Never cried out or seemed distressed. The home called us to let us know that he was a little unsettled and they'd given him something to help so we left to go straight up. We were there within 20 mins but got a call just as we turned into the car park to say he'd gone. So we sat with him for a while and said our goodbyes. He looked so serene and peaceful. He was ready to go in the end. Bless him. I'll miss him so much.
Hi Pam
So sorry to read your Dad Passed away,Hugs sent (((()))))))) Condolences sent to you and your Family
Love
Tom xxxx
Hi Pam, thanks for the update, I missed your original post having been away from the forum on hols etc. I think you hit the nail on the head when you said he looked so peaceful I would bet your Dad knew the end was coming and just wanted a peaceful end, which is of course what we all want.
Although too late now as a matter of information persistent urinary tract infections are a classic sign of Myeloma. I had it myself before I was diagnosed.
All the very best to you and your family, kindest regards ? Vasbyte
David
Realy sorry to hear that your dad died but pleased to hear it was peaceful. It is all we can wish or pray for for at our end. Gillxxx
Hi Pam so sorry to hear your dad has passed away . A peaceful end is all we want best wishes Bridget
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