I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Darthvadar on November 09, 2011, 01:57:16 PM
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Hi All...
As most of you know, I'm caring for my darling mum, Elsie..... She's got CKD, and is on CAPD.....
About a year ago, she was unfortunate enough to develop Parkinson's Disease, and she has gone downhill rapidly... The shaking is MUCH worse, and her balance's pretty bad... Since July, she hasn't been able to do her own dialysis as she's been too shaky... I've been doing it, and I have to say I'm finding it quite a strain... Trying to assist a very dependant person to shower, dress, toilet (only sometimes as yet), eat, drink, etc. is particularly wearing as a wheelchair user myself, but I was muddling through, and managing....
However, the man upstairs has decided to throw yet another little grenade at me.... I don't know how much more I can take....
For a while I've been worried about Mum's memory... Forgetting little things, where she put her glasses, etc, a loss of interest in reading, not always being orientated as to the day of the week, or the time of day, or telling me she'd like a certain thing for dinner and then telling me as I serve it that she'd asked for something else, etc... Small, insignificant things in themselves, but a concern all the same...
I made a new appointment with the Age Related Medicine Team at the local hospital, and they confirmed what I suspected that her physical condition has deteriorated badly... They also carried out some cognitive tests, and while Mum was with the physiotherapist, the consultant asked to speak to me... He asked me what I thought about Mum's condition, and I mentioned the things I've already mentioned in this post... He asked me if I've ever heard of Parkinson's Dementia???... I have, and don't like it very much... He tells me that he's certain that Mum has it, and that she'll continue to deteriorate mentally... He's told me that the condition's VERY like Alzheimer's Disease, only affects people with Parkinson's, and there's no cure... No real hope either!.... I'm totally gutted!... I suspected it, but really didn't want to hear it!....
They're going to carry out some more tests at the Day Hospital where they'll take her for a days physio, etc once a week for a few months... They're also going to change two of her meds to see if that makes any difference... We'll see... I've applied for a Home Care Package from the Health Service Executive to get some help in for a certain number of hours a week... Getting funding for such things is ALWAYS a battle... The consultant says he'll write a 'glowing report' to the HSE supporting my application... The Carers Assoc. have been fantastic, and have had a few Respite Care Workers trained in how to do Mum's dialysis, and I'm going to put the pressure onto the HSE to let the assoc deliver the package.... I REALLY need help now!....
There are times when I just want to cry... I'm struggling enough at the moment... I don't know how much more I can take!... Whatever about physically, I'm cracking under the emotional strain....
Thanks everyone for listening... I know I can have a good vent here and always get a sympathetic ear....
To those of you who pray, please spare a small prayer for us... God knows we could use it!....
God bless you all....
Love...
Darth....
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Oh, Darth,
You know how much I care and I wish I could do something for you. :grouphug;
This is such a blow....much more than you should have to carry.
I just wish I could do more than commiserate. :'(
Sending warm, loving hugs your way.
And some treats for Dougal and Jelly beans for Mum.
:grouphug;
Aleta
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Thanks Aleta...
Really appreciate your support!....
Life's a real B with an itch sometimes!...
Love to Carl....
Darth....
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Oh my...I feel rather overwhelmed just reading about this. Is there anything at all we can do to help? It sounds like you have some good resources available; I hope you get all of the practical support you need and your mum deserves.
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I am so sorry Darth
I am sending prayers and hugs your way...I wish there was more I could do for you :grouphug;
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darth, my father died in late august from kidney failure due to alzheimers. for the last three years or so i've been traveling from colorado to oregon every 3 months or so to help my mother and unfortunately watch my dad deteriorate. he was 90 on his last birthday. it was time. i know just how you feel. it's hard to watch someone you love to battle greatly, you want the end of their life to last a long time and be sunshine and rainbows. know that i think of you often and wish i could make this as easy as possible for you. hopefully you will get the help you need. every little bit goes a long way.
susan
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I'm so sorry Carolyn :cuddle; I know you were so dreading that that might happen. I sort of know what you are going through. We had to face the Alzheimer's with hubby's mom last year. It is terrible. And you are right it never seems to rain but it pours. You know I am here anytime you need someone to talk to. Feel free to pm or get in contact with me anytime you want.
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:grouphug;
Hope the change of meds helps her, and hope you can get some help soon, too.
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Oh, Darth. :cuddle;
Wish there were something more I could do. Thinking about you and your mum here and mentally sending you all the comfort and strength I can muster.
I hope you're able to get some help in and that the med change has an effect.
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Thanks everyone...
Really appreciate the support....
I'm just hoping that Mum doesn't live long enough for her to lose who she really is... I'd FAR rather she were to slip away while she's still Elsie, if you know what I mean!.....
Take care Folks, and thanks again....
Darth...
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Oh gosh Darth, I'm so sorry about your mum. This brought tears to my eyes. I can't offer much more than *huggles* but hope you find them acceptable ...
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Rotten news, Darth. My sympathies.
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Darth sending you loads of hugs. Please don't let this get you down, you are so brave and focused you have done a really good job of looking after your mum and your self. Let people help you don't :grouphug; knack your self up.
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Wow, I just saw this thread and Carolyn I feel simply awful that you and your Mum (but mostly you really) are having to deal with still more stuff. And I completely know what you mean about hoping that your Mum doesn't have to lose who she is to illness. My thoughts are with you and I really hope that you are able to get approved for any and all support services that will help. :cuddle; :grouphug; :cuddle;
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Awwww, Caro, you are going thru your own particular hell, arent you!! So sorry to hear of this. Life is hard enough as it is. Will keep both of you in my prayers.
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Im so sorry dear lady.. It's more than anyone should have on them... It broke me to tears, actually bawling thinking of my own mom, and some of the same type of things we went through there at the end. I loved her so much, and she was so dear, and i didnt want her to 'fear' anything. We 'were' blessed. as she slipped away in her sleep. It still hurt, and i cry hard still, i miss her, but i think of the blessing of her passing to her and to me. That may sound awful, but i hurt every day fearing that she was slipping away mentaly, and it was beginning to bother 'her'. God is good, and i pray that he puts His blessings on you both,,,Bringing back some health, and help, or bringing peace with how thing are. Warm hugs, and prayers for strength... :grouphug;
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Reading this post has brought me to tears , and made my own problems seem insignificant . Darth , you are an inspiration and I hope things have improved for you since you wrote the post .
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I hope so too, all the best + love
Cas