My name is Christine and I am 63 years old. I did do a post back in June last year when I joined but things got on top of me.
Things are probably slightly worse now but I really feel a need to be amongst people who know what caring is like and how it can affect you.
My husband is now 59 years old. Having been extremely healthy all his life, he was diagnosed with Motor Neuron disease in November 2018. When I first posted last year, he still had some mobility, was still able to eat and could leave the house with assistance. Now he is completely housebound, his diet is confined to liquids and pureed food and his speech is completely gone.
I am unsure how to put this and hope there are others out there who know what I mean but in a way my problems as a carer stem from the fact that my OH is likely to live longer than his original prognosis suggested.
Having actually put that thought in writing, I have to go and see to some things. If anyone is interested, I will come back later to clarify.
Chrissie, it’s a horrible disease. We understand.
Are you getting any help?
From what you describe it’s time for him to have a Continuing Healthcare Assessment. I suggest that you write to the Practice Manager asking him to arrange this for you. Send the letter recorded delivery and keep a copy of the letter and your receipt. Some CCCG’s are very good, others are dreadful. When I tried to get it for mum, none of my phone calls had even been written up!
My Gran has MND- diagnosed in March last year, but showing symptoms from the March before that.
She is very close to the end of the disease now (she refused a PEG and breathing assistance). She can no longer swallow any liquid without choking/coughing and spluttering on it. She only has about 20% use of her right arm and 5% of her left hand left.
I know exactly how you feel- this disease makes you, as a carer, feel like it. It is the most awful disease that robs the person afflicted (and their carer) of so much and it feels like a constant adjustment to try and keep up with the rapid changes. I am hoping that my Gran goes peacefully in her sleep in the not-too-distant future.
With MND, you feel like your life revolves around the person you’re caring for and you feel you have no time to yourself. If you are doing everything on your own, please get in touch with the palliative/MND Team to ask about Continuing Healthcare. It’s funding provided by the NHS so your husband will have the care he needs (whether that be in-home or otherwise). Make use of this, for your own sanity
Feel free to PM me anytime, with any questions surrounding MND- I feel like I’ve ‘been there, bought the T-shirt’ xx
I know practically nothing about MND but I do know about caring for longer than originally expected.
My dad was diagnosed stage 4 lung cancer in August 2018 and we were told terminal. Desperate to see dad comfortable in his last months, I moved him in with me.
By Nov it’d spread to his brain
By Dec my partner of 9 years moved out, unable to cope with the loss of privacy and my dad’s manipulative ways. By March our arguments about dad had split us up.
I honestly thought I was signing up for a year.
Here we are, immunotherapy is like a miracle drug for dad. All 3 brain tumours gone and he’s reapplying for his driving licence. Lung cancer down 40%. He broke his back 6 months ago which has slowed him down a lot but he’s fully mobile, just with more pain to manage. He’s as demanding and manipulative as ever
I’ve felt the most horrible mix of emotions at each Dr visit with good news about his cancer progress. The resentment, crushing guilt.
So if you ever want to pm me about your caree surviving longer than you ever expected, please do.
I think many of us here understand how you feel. My Dad lived far longer with his illness than anyone expected. And by the end it was pretty unbearable at times. I really just wanted it to be over for his sake and ours. Also signing up to care full-on, 24/7 for a few months is entirely different to signing up to care full-on 24/7 for many months.
Let us know if there is anything we can help with. I assume he receives CHC funding for his care? Have you looked at options other than home for this last stage? It may be a hospice would be a good option now if having him at home is too much. Sad as that might feel, it might give you the breathing space you need to have quality time by his side in these last weeks/months rather than feeling burnt out and frazzled?
Please take care of yourself We are here and understand.
Just checking your husband receives help from care workers in addition to he support you give him? Has he been assessed for Continuing Health Care cover the cost of his care?
Sorry I can’t give you any advice about the particular health issue but my Mum’s husband was given one year once he was diagnosed with myeloma but lasted three years. The last year took it out of all of us. It was like we had the cancer as well as him. I don’t think any of us thought of it as caring as Mum was a devoted wife. When the GP said you could claim carers allowance, Mum almost battered him with a rolling pin!
When he did pass, both Mum and I were crying our eyes out but I think it was more out of relief that he had finally gone than sadness. We knew he was going to die but it just went on and on and on. The hospital kept telling us it was almost time for him to go but he managed to come back loads of times. We had to rush to and from the hospital so many times on top of looking after him and towards the end, he was just plain rotten to us all.
The consultant at the hospital told us not to make contact with Marie Curie nurses so we didn’t really have anyone to turn for support. Not sure why we were told that but we were so worried and running around like mad people it never dawned upon to contact them anyway. Do check up as to whether there is support for you. You will definitely need it.
