Diagnosed later in life

[Gingermanor60]

Hi I’m Lesley 60

My husband John is 87

Diagnosed eventually with MSA about 5 years ago

Looking back his symptoms started 15 years ago with Erectile dysfunction which we put down to age

Bad dreams and punching out in sleep caused us to have separate bedrooms 11 yrs ago

7 years ago imbalance started and a slight tremor so we went down the Parkinson’s route

No reaction to medication trials took us to John Radcliffe hospital in Oxford to Dr Hu

She diagnosed probable MSA very quickly

We have dealt with the deteriorating affects of MSA and John is now bedbound with little movement, carers 4 x a day (godsend)

Catheter. Trouble eating. Refuses PEG

Sleeps 80% of the day

As you all know it’s hard, but we get on with it

Yes I would love to know the end date but heyho it will come one day

As he often says I could go before him

He could be right 🥴

[Diane831]

Sometimes it seems as if it would be better if we knew what was coming but I am not sure that is the case.

You are doing well keeping going in the difficult circumstances in which you find yourselves. I hope that you can find something to smile about through the days. Take care of yourself.

Diane x

[Hidden]

Bless you, I'm 57 and I too find it hard. Moving and handling Peter into bed or out chairs. I get so tired, with working full time and three boys to look after. Well! Some days i feel absolutely shattered. At present Peter hasn't got any carers in its just us. Not even sure how you would organise that when the Peter is either bed bound and in a perminent wheel chair! But we keep going and take each day as it comes. Best wishes Sharon x

[Gingermanor60 in reply to Hidden]

Gosh you are amazing coping with a job and children too

I have my son at home he’s 24 so can pick John up and move him around

We have a hoist too

You must get help in

I was very hesitant at first

Invasion of privacy etc

But they deal with all the messy stuff and he’s much nicer to them (of course) so I’m glad we are not grumpy with each other all the time

That’s the bit I find the hardest

His deteriorating mindset

Arguing (I really try not to anymore) and sure he’s right in his addled mind

I call it “does not compute” he can’t cope with decisions but on the other hand still wants to be in control

Frustrating for both of us

So yes carers keep me sane

I can walk away get a coffee and know he’s cared for

We have created a little chat group with the regular carers where we update on his needs and also have a laugh at silly things going on in life

They think I’m amazing

I think I hardly do anything any more 🥴

[heysunshine in reply to Hidden]

I am in total agreement with Lesley! You should really look into getting carers in to do the daily living routines. This allows you to maintain a more spouse/partner relationship to your husband and be a "human BEING" to him instead of a "human DOING" to him!

Having some time to organize your day, take a walk or nap or chat with a friend (especially if you are also splitting your time working) will allow you to be able to cope with and be with your husband to provide the "highlights" of the day.

The carers can be arranged to come in the mornings to do the wash up and feeding/food prep, in the afternoons to assist with moving him and lunches and again over dinner hour to feed him while you both eat together without either of your food getting cold. This also allows you to hold a conversation with him in a normal manner. Also an late evening visit allows them to do the nighttime move to bed & wash up and bed time tuck in. Then you can share an evening TV time together. You need to just try it and then adjust the schedule to fit your lifestyle... but allow them to do the essential daily living activities. Maybe you concentrate on the meal prep, because that may be a highlight of his day to enjoy his food or something you have prepared lovingly. If you have to, tell him YOU need the care help to come in to keep you healthy and to cope maybe even more so than he needs them. You may find that he quickly gets over his pride or feeling of embarrassment in having a "stranger" do intimate things to assist his bodily functions. Remember, if you injure your back or strain your muscles... you will be unable to help him. You would rather make these decisions proactively rather than in a crisis situation. I know... I injured my shoulder due to repetitive strain when moving him daily and then I HAD to have the help. My husband could barely stand to see the amount of strain and stress he had caused me through no fault of his own.

[heysunshine]

Blessings to you Lesley. You sound like you are doing all you can for John and maintaining your relationship to remain as healthy as possible.

It is never an easy journey, but being proactive and managing the symptoms instead of letting the symptoms manage you is about all any of us as caregivers can do.

Keep up your positive attitude and sense of humour!

Sending Hugs,

Celeste

[Gingermanor60]

A friend once said to me

Put your own oxygen mask on first

You’re no use to anyone if YOU can’t breathe

Hugs and love to all of you

Xx