Care Homes

[Beemer]

Mick's MND nurse once suggested to us the local hospice. Mick could have had a day a week there, activities, lunch etc, they would have picked him up in the morning and brought him back. It wasnt something he was interested in but I later met a man at an MND charity in the area and his Wife went every week and enjoyed it. Maybe there is something like that in your area, it would be a day off for you both

Thanks shrew, I shall ask my O.T. and see what if anything is available, although during this pandemic, I would not have thought so.

[Suefromwakey]

Beemer,

What a dilemma this is and I fully appreciate your wife and her problems, transitioning from Wife to Carer to Nurse isn't something that anyone would wish for it has a massive emotional impact apart from anything else, you end up running the whole house, garden, meals, even getting the car cleaned absolutely everything - I have to plan shower days - start to finish its over an hour - why should I have to do this I have asked myself many times,

why the hell should my life be impacted in such a way, why shouldn't I have my 5 holidays a year, why should I not be able to see a friend - why should I have to empty the bottle god knows how many times a day - why, why, why ???

I am having to cope with this whilst grieving for my son - why?

Anticipatory grief comes into it..........what am I to do should I survive this nightmare........all on my own.......and even if I did get to go on holiday for example it will never be the same - how could it be?

I have worked all my life since I was 15, never been a sciver or scrounger.............took early retirement at 63 and got this dumped on me..........god I could go on forever here,

I joined the local carers group early on - got to the door of the first meeting burst into tears and came away - stepping through the doorway would have meant I was no longer the wife but the carer - couldn't do it - reached out to them once since, waste of time,

In some respects for me/us Covid has made it ok to stay in, so at the moment we live with it as we all do - but the impact of having the restrictions removed will be great as by now after all this time my husband can't leave the house - he has been robbed of his life in more ways than one and so have I,

As for some kind of respite care - I cant do it - how on earth could I be gadding off for the day knowing he's somewhere he doesn't want to be - all this speak of switching off and thinking of yourself for a while - never going to happen - its a joke to suggest such a thing but not a very funny one,

I'm not looking for sympathy or praise here I'm just saying it like it is - your wife will be suffering all these anxieties and emotions I fear, perhaps getting her to come on here might help? if she can see that she is not alone as quite a few on here are carers rather than sufferers,

She too could come on and have a bleat,

Hope I have not upset your day - but this will probably be the hardest thing in her life to compute,

Sue

[GaryM]

Excellent post, Sue. I think you've summed up perfectly how a lot of carers probably feel. My wife would certainly identify with your feelings. Coping with the illness is bad enough in normal times, but this virus has made it doubly challenging. I feel as if my last few years of life are being stolen from me by this lockdown. I accept that the illness seems to be down to chance, but in my opinion the virus was entirely preventable. I also realise that a lot of people have lost loved ones in the last year.

[Bowler]

Beemer I can certainly relate to and empathise with many of the comments made throughout this thread. I certainly agree with Sue’s comment about getting your wife to join the forum. Everyone is different and I guess every person that cares for a loved one will experience the why me bit but understanding that she is not alone might help.

The one comment I haven’t read is the reason I believe we all do what we do for our suffers and that is we love them. For my part we had worked our way through our marriage vows. We had done the poorer bit ( big time ) and the in health bit. Never really got to the rich bit but did make it to comfortable. So that just left in sickness. It is obviously 50/50 as to which one of us this could be however what I am 100% certain of is Ann would have done the same for me.

Yes it’s exhausting physically and mentally and yes there are days we think we just can’t do it anymore but right now I would give anything to be back to doing all those tasks because what I have now is infinitely worse but that would be selfish because Ann had truly suffered enough.

Beemer, I’m sure you will find what works for you both.

[Deb]

Phil, Sue, Beemer and Gary. There are some lovely words here. Very emotive... I have tears in my eyes reading your words Phil. .. we never quite got to the richer part either but we had lots of fun trying to get there. ( I kept spending money !)

Like Phil says i am sure you will find a way that works for you Beemer. On the day I was diagnosed my husband said we were in this together and it could have been either of us. He vowed to always look after me. He's not one to discuss his feelings but he does admit to being heartbroken at seeing me going through this. Thats not to say we don't snap sometimes, usually when we're tired but we never go to sleep on an argument.

I think COVID has made a very difficult situation harder. I feel so cheated of precious time with my family and it's made it impossible for my husband to have a break. I used to have friends round whilst he played golf . If we were having a bad day we would have a drive in our WAV in the country with loud music playing and stop at a country pub. I have obviously got weaker in the last year and its hard to imagine being able to do these things again although I am determined to try. I am sure the lack of motivation doesn't help.

Partners do an incredible job in heartbreaking situations and should feel very proud.
Love and hugs to everyone,
Debbie x

[Jacquij]

You have all written about so much that has has applied to my Husband and I. Life has been very dark at times for us and I have felt such a burden to him as he huffs and puffs at requests and at other times he makes a joke and says it is not a problem.

Recently it has been so much harder and I have found his reactions so difficult to cope with that I started to make enquiries about going in to a care home, even though it was the last thing I wanted but I could not cope with it was affecting him. When he found out he and my daughter went ballistic but i think they recognise how hard it is for me not only in all the physical and psychological changes this disease has had on me but on us all as individuals and together as a family. My Husband has now acknowledged we need more help even if it is just to have time on our own where we can get away from each other or to have a break from the actual caring responsibilities and just be husband and wife.

We have carers in the morning to help me get up but we now have a PA who either helps me go out for a walk or for a drive, or to stay with me while my Husband does the same or let’s him attend his own health appointments as well to put me to bed giving him so much needed sleep.

It has been hard to get to this point but is worth it, but talking is important as well as being realistic and remembering you don’t have to do this alone. I also think by having some support in gives you a chance to build up a network of support and helps people to get to know you and your ways but also as a back up if anything goes wrong if your partner might not be able to support you whether it is due to illness or something else.

I fund my own care unfortunately but my Husband does have 8 hours a week which he got from his carers assessment from social care which is not means tested and I would urge everyone to apply for it does make a difference.

[Suefromwakey]

That's interesting about the money Jacquij - not wishing to be too mercenary that is,

at the moment I get full carers allowance of 69 quid a week but I understand that at the begining of March that will stop as I will be eligible for my first state pension, carers allowance is taxable and my pension will take me over the limit of what I can "earn" which is 128 quid a week - of course the state pension is over that,

even though they have made me wait an extra 6 years to get it - that's another story gggggggggrrrrrrrrrrr

should I be getting an assessment of some kind then?

thanks

[Bowler]

Sue, The day I started to receive my state pension my Carers allowance was stopped. When I checked this with the MNDA help line they confirmed you can’t get both. I asked if there was anything else I should be claiming. I was told that our joint savings and income was such that nothing was available. However they did say I could claim council tax reduction because had to use a wheelchair in the home. A quick phone call and a letter from the GP confirming the date Ann started using the chair I got the reduction backdated to Ann’s start date. From memory it was about £1.7k.

[Banned]

Care homes are a poor substitute for care at home and in many cases hastens the end.

There is much to take in with MND, 'here's your diagnosis, I think, now get on with it!'

As soon as symptoms appear with MND, apply for CHC. You will be rejected first time, but it is essential to be in the system.

It is important to have a frank chat at home. Things ain't gonna be the same. Everyone has to sing from the same hymn sheet. Carers must be allowed in the home. MND is far too much for a single carer.

[denise]

Beemer hi
it might be a great help for your wife to come on here and read these posts. She will realise she isn't alone in her thoughts. She might well want to vents some feelings of her own. Then again the thought you might read them might put her off.
this whole things isn't easy because we are all so different. Have to say reading all these posts have made me feel a lot less alone. Which is something as I am totally alone. I'd give anything to be in the same country as my family never mind the choices you all have.
Denise xxx

[matthew55]

Both my mother and her father were killed by care homes. Be warned 😠

[denise]

They are still using care homes for covid suffers. This can't be right.

[denise]

My mum died in 2014. She wasn't in the care home very long. Price per week £850. I hate to think what it costs now.

[Beemer]

Beemer hi
it might be a great help for your wife to come on here and read these posts. She will realise she isn't alone in her thoughts. She might well want to vents some feelings of her own. Then again the thought you might read them might put her off.
this whole things isn't easy because we are all so different. Have to say reading all these posts have made me feel a lot less alone. Which is something as I am totally alone. I'd give anything to be in the same country as my family never mind the choices you all have.
Denise xxx

It was "interesting" to read that others have, or had similar problems, as I thought it was just me being a selfish bstard and should accept what I have and be thankful as there are certainly people worse off than me on here and seem to be getting along with their significant other quite well.
I take on board that maybe my wife could read this forum, but she knows I am on it and shows no interest in looking on it.
I do not see any future for me so maybe the best thing would be for me to finish my days in a care home, less aggravation for my wife and family.

[Ellie]

Beemer It's all relative and other people's comments are subjective, as seen only through the author's eyes.

Only you know what would work best for you, in your individual situation - whatever you do, do it for the right reson.

Sending you a big, virtual hug.
Love Ellie.