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Gerrys advancing MS

I have not posted for a good while but I see some of the old regulars are still here

My husbands PPMS is now very advanced with almost total immobility and all the other physical symptoms, eyes, skin infections, oral thrush, poor teeth due to the high level of meds, pain and sometimes confusion.

However we have a massive care package and I get a weeks respite 4 times a year.

Its with a heavy heart that a Nursing Home must now be considered. Regularly Gerry has acomplete personality change and treats me so badly. I believe that if he was not totally confined to bed/wheelchair I would be in fear of physical violence. Hes ruined Xmas and upset me and my 24 year old who cannot bear to see his mother driven into the ground by this awful illness.

The day before Xmas Eve he tried to get out of bed in rage. I immediatly phoned SS who organised emergency Respite from the next day- but I couldnt ask him to go that close to Xmas.

In the New Year we are seeing his Palliative Care Nuse to sort out a Nursing Home. She has been so supportive. I just feel so guilty and I know that this is not Gerry but the illness.

How did my wonderful husband turn out like this?

Love to all

BridgetX

Hello Bridget

I am so sorry to hear of your current struggle - this b****y disease can often take away the person that we married and replace them with somebody we don’t always recognise. It’s devastating for everybody involved. My husband Geoff also had PPMS and went down really fast over the last 4-5 years, even moreso when he fell from his wheelchair and broke his leg which would not mend. I was lucky in that the more he went downhill, the gentler he became. He never ever complained and to the end was an inspiration to us all.

I hope you are able to get things in place to make it easier for you all, and that you find the strength to continue to be the support that I know, from reading all your posts in the past, you have been.

My thoughts are with you

June x

Hello Bridget. You and I talked a lot together at one time.

I have often wondered how you and gerry are doing.

I am so sad to hear how bad things are for you both now.

I do think a nursing home is the answer now.

As you say, this is not the Gerry you know.

he must be in torment too.

My thoughts are with you.

Look after yourself.

luv Pollx

Hi Bridget, like Poll I often wonder how you and Gerry are coping. I’m so very sorry things have got so bad. The nursing home is the right decision Bridget… it’s impossible for you to keep coping like you have been doing for so long. Nothing, absolutely nothing for you to feel guilty about. You have done an amazing job for a long time Bridget. You really have done your very best for your husband and a nursing home now is still doing your very best.

My heart goes out to you Bridget.

Take care,

Love Pat x

Hi Bridget. I haven’t been on for a while either. So sorry about Gerry’s deterioration. I know the feeling of guilt as my severely disabled son will have to go into residential care at some point. He has been agressive on many occasions and I have the bruises to show for it. I am not going to say don’t feel guilty because we are only human and sometimes we cant change the way we feel. When deciding whether someone has to move into any kind of residential care it is better if all the family believe that it is the right decision. At least then you can support each other. My friend was in the same situation as yourself and her husband went into a nursing home. She then felt that she had some semblance of a normal life with her two sons and was able to visit her husband as often as she likes. Bl***y ms. It takes so much from us. My heart goes out to you and I will remember you tonight in my prayers.

((((((((hug)))))))

Mary

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Hello Bridget

Just wondering how things are with you? Have been thinking about you since you posted this, and hope you are ok

June x

Hi all

Gerry is still at home and was ok until today

Hes now gone partially blind and being horrible.

The Palliative Care Nurse phoned today and he was ok at the time now hes being horrendous

BridgetX

Bridget…Im really feeling for you and praying that things get sorted out for you soon, I know how you feel when the awful behaviour kicks in , it just destroys you… but then you feel so much for them as you know they have no control over their actions…it is all so sad for everyone.

keep strong x K

Hi bridget, I am sorry to hear how things are deteriorating for you and gerry. What about a spell of respite for you both?

luv Polllx

Im sorry Polly but Ive tried respite for 7 years- it just doesnt work for me. When the respite is over I just have to carry on a before. I have a family and myself to consider. I had an invasive procedeure today without anaesthetic- as I had to look after Gerry.

Hi Bridget

I was in a similar position last year, my husband passed away in December. It wasn’t until he went that I realised it wasn’t so much a break that I needed (my husband refused respite), but just some support so I felt like I wasn’t struggling along with it by myself. PM if you want to chat, or if I can be that remote support. I too investigated the avenue of nursing homes, but it couldn’t be done without his consent (hey, he refused respite and sitting service, he definitely wasn’t going to even talk about a home!)

Samantha

x

Hi

I am reading this wondering how i will cope during the advanced stages. Currently i just about manage to the care work and run the family.

What i see missing in many posts is that there is no moral support in the background for some.

Its a couple feeling very alone. I know that feeling and wish it was not so comomon.

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Hi Mattwest, as you can see from earlier replies on this thread, I used to chat to Bridget and ask about Gerry.

Not seen anything for quite some time from her. I wonder how they are.

I look in on this board now and then and wish all carers the best.

My hubby is my main carer and I know how hard it is for him.

Almost 5 years ago, I persuaded him to let me apply for Direct Payments, to pay for help.

He wasn`t best pleased, but he has RA and so I knew something had to give.

It was the best thing I could`ve done for both of us.

We got that help and have had it increased, as my condition worsened.

I have 3 ladies who we both trust and value. I now get daily help with toileting, showering, dressing. I also have 2 sleepovers a week, and they take me on short breaks.

All this really lets my hubby have some me time and a break from me needing him.

Do you think it could help you?

luv POllx

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Bridgit,

You asked a question. I can only suppose it’s rhetorical. Last night I pulled the handle off a cupboard door and I flipped.

Valentine’s Day ruined in 15 seconds. I was ghastly. The flowers? the card? Worth nothing. The love of a woman who didn’t take it personally, worth all the flowers in Holland.

I am humbled by her display of sheer tenacity. She’s never going to let me go. I hope I don’t make her regret it. I hope I can make it up to her this side of the Pearly Gates where she is destined to end up. But it’ll never be enough, whatever I do.

And this reply; it’s not an adequate response. I just care about all of MS Family.

A.

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I haven’t been on here for about 3 years and life has changed dramatically. I suppose I just wanted to distance myself from anything ms related.

Gerry is now in a lovely care home. His room is enormous and he has an outside area with lots of potted plants that I do for him. The staff are excellent and he is very well cared for. He is still able to use his computer/printer and has a TV and stereo in his room. He can go out alone into the local town and manages very well.

Shortly after Gerry went into care both my parents died. I was caught up with arranging things and renovating and selling the house.

Today I only work part time and life is much easier.

Thank you to everyone who messaged me and I wish you all the best

Kind regards

Bridgetx

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Nevertheless, we’ll always be here for you.

A.

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Thanks x

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Hi Bridget although things have been horrendous for you, I am gad you have been able to let us know how things are.

Look after yourself hun.

Say hi to Gerry for me please.

pollx

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Hi Bridget, I never look on this board but did today and was pleased to read your post.

Not pleased that you have been through so much and lost both of your parents, but pleased that Gerry is in a good care home. I remember how worried you were about making that move & it’s lovely to know it’s worked out well and sounds like such a great place.

Often think of you and Gerry.

Give my best to Gerry…and all my best to you Bridget,

Pat xx

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