Fairly new to being a carer

Dear all you very kind people.
I.am sorry to reply so late (difficult week) but I am overwhelmed by your kindness, good sense, encouragement &.friendship.
I realise how much your own experiences have been challenging & how much your wisdom has been hard won.
It's taken a long time to be seen by a Parkinsons nurse but we do have an appointment booked in a few weeks.
Meanwhile I will take all your brilliant advice on board & keep going - we just need some sunshine now!
Bless you all ❤️

Luckygirl3

My late OH had PD for many years and it presented many challenges, but all through I made the decision not to stop my weekly choral society and also the choir I run. This meant I sometimes needed to employ care so that I could do these (in the end he had full time care and then nursing home) but keeping these going saved my sanity and these activities were absolutely sacrosanct throughout.

Choose your activities and move heaven and earth to maintain them. They are still there for me now 6 years after his death and could so easily have been lost to me if I had not stood firm.

You matter too - when being a full time carer it is so easy to feel guilted into thinking that only the cared-for person matters. Please try and resist this.

I am sending you lots of good wishes.

This! I’ve been looking after my husband for 4 years and have worked hard to maintain my own life. Respite care is also an essential, I try to get away 3-4 times a year. You will get tired and burnt out if you don’t, it’s not just the physical work it’s the emotional stress. I also find time to meet friends for coffee and walks. Carers mainly for help, but friends and family,ily occasionally. Do not give up your life you will end up bitter and resentful.

Yes I miss so many things too. Now to go anywhere or do anything I have to plan and prepare and even then is a battle just to go to the local hospital and back.
When we reached our mid seventies we thought it was our time to relax and enjoy life, thankfully we did travel a lot when we first retired. My advice to grans on here looking after GCs like we did is to keep in mind that time is short, they never know what is round the corner.

Fallingstar

Am so sorry Primrose53. We seem to have trodden a similar path. My DH had a massive stroke 13 months ago. Before that we cared for our GCs so our adult children could work and for my FiL. And now this.
Sometimes I feel like screaming or weeping or both. Is just so incredibly hard.

Sorry you are also in the club that nobody wants to join “Fallingstar*.😥

I just so miss little things like getting up when I want to, going to bed early if I choose to and reading or watching TV. Doing things on the spur of the moment, going for a bike ride at the drop of a hat, going to the cinema with a friend, spending a day out browsing shops, going on a coach trip etc.

Am so sorry Primrose53. We seem to have trodden a similar path. My DH had a massive stroke 13 months ago. Before that we cared for our GCs so our adult children could work and for my FiL. And now this.
Sometimes I feel like screaming or weeping or both. Is just so incredibly hard.

If you are tired and feeling burnout, you need to look after yourself as well.

Parkinson Care Organisation provides free respite care to carers. It says 4 hours at one time.

Have a look at this link.
parkinsonscare.org.uk/apply-for-respite-care/
Complete the form and see whether they can help you.

I have been looking after my DH for the last six months since he has his hip operation. It was full on and sometimes I felt overwhelmed.

He is much better now, and I can soon resume meeting friends in the town and attend my Zumba class again.

I find there is very little help at all for carers in Norfolk. I have had a carers assessment which wasn’t worth the paper it was written on. I was referred to an organisation that supports carers. After lengthy discussion all I got was a lanyard which read “I am a Carer”. Fantastic! I wouldn’t wear that anyway and it serves no useful purpose.
The NHS washes their hands of you regarding physio, speech therapy, follow ups after a stroke and the GP was hopeless too. He was like “well you have had a major stroke” so implied we just get on with things. I have been caring for my husband now for 16 months and am absolutely worn out.
I have no time to do what I want or need to and have finally made an optician appointment which should have taken place last June!
I cared for my Mum for 14 years before this and had about 4 glorious years meeting friends, going out and doing what I wanted to and having short breaks with my husband before he had his stroke and now I am caring again.
Moan over.

pdwarrior.com/ this is for him, I'm sure you've heard of it.

Like others have said, prioritise your needs too and get carers in if they are sometimes necessary, so you can relax when you go out to meet friends.

My fried who is looking after her husband has care each day to get him up and suficient care one day a week to have a day off. This is a day she can plan to visit friends, exihibitions etc. With mymother I had care evy morniing they got her up and brought her to the breakfast table where I had breakgfas ready. when I went out we had extra care for tea or going to bed.

i became my husbands carer when i was 31, they thought it was a brain tumor but after 3 operations and not finding a tumor (it only showed up on scans as a large mass) they sent him home after 7 months and left me to get on with it, back in the 80s care was not great, i had to teach my young son how to look after daddy when i had to go out, my husband could move about and go to the toilet etc but he would get emotional at not being able to find the jam for toast and that was draining, it was so hard for me to watch him getting so upset when that was not the man i married, he died when i was 39 when a doctor made a mistake while he was in hospital and i still miss him even at the age of 62, take all the help that you can, go out and about and keep doing the things you enjoy, i wish you lots of hugs.

Have been a full time carer to my DH for over a year since he had a massive stroke, has been a tough learning curve. But agree totally with all advice given, I get out once a week ordinarily to have a meet up with friends for lunch, a good neighbour we have known for years sits with my DH, I leave them both lunch.
We now have the higher rate of attendance allowance, do look into this and any other help you can get, an OT should advise on any adjustments you might need to make in your home in order for your DH to be more comfortable. This should be free.
Also look into local support groups not just for your DH but yourself as well.
We have a lot of help from the Stroke Association.
Have you registered with the GP as his carer, would advise this for it will help when applying for AA.
And treat yourself every so often, this might be a nice take away or subscription to Netflix etc., or just taking a long soak in the Bath with some lovely bathtime goodies.
❤️

I absolutely agree with the advice Luckygirl3 has given. My husband also had PD and I paid someone to sit with him once a week so that I could maintain some volunteering I did. I was very lucky in that she liked ironing ( which I hate) so she did some while she was here while she chatted to him. Later he was usually asleep but she still did the ironing and was here keeping an eye on him. You should get AA and I recommend using some of this to enable you to do things you enjoy doing and to keep up with friends and hobbies. Your husband should be seen by a Parkinson nurse, and they will be a source of advice.
It’s a miserable disease, good luck to you both.

I’m not in your situation but have spent most of the last 2 years looking after my DH who has had chemo and major surgery as well as some other complications. I know what it feels like to be restricted and give up independence. 🙏🤞DH is now much better and I’m finding it difficult to reclaim my life.
My neighbour looked after her DH for about 4 years before he died. She gave up absolutely everything and devoted herself to him. She refused all help and had a live in carer rather than put him in a home. Only now, 3 years later she’s getting on with her life. It’s totally possible to devote yourself to caring but still maintain some of your activities. Please ask for help wherever you can find it. An occasional break from caring will make you better at doing this very difficult task.

Luckygirl3
Huge thanks for your very compassionate and helpful reply. I'm so sorry for your challenging time, but I could not be mote grateful for your words.Thank you for your good wishes & may I send mine to you.

Look on Carers UK to see if you have a designated group in your area.Ours is very good and offers all sorts of services and drop in cafes etc. You'll be able to meet with people going through similar to what you are and there are usually people that work for them who understand the system you are going to have to navigate if you are going to require carers to come to your home or respite, I would suggest getting in touch with the adult social care team and asking for a carers assessment for yourself

Help line not help file. My phone needs help.

Please ensure that you are accessing all the benefits to which you are entitled.

I assume there is a PD help file that may be able to help you or AgeUk can sign post you.

I imagine you should be entitled to Attendance Allowance.

My late OH had PD for many years and it presented many challenges, but all through I made the decision not to stop my weekly choral society and also the choir I run. This meant I sometimes needed to employ care so that I could do these (in the end he had full time care and then nursing home) but keeping these going saved my sanity and these activities were absolutely sacrosanct throughout.

Choose your activities and move heaven and earth to maintain them. They are still there for me now 6 years after his death and could so easily have been lost to me if I had not stood firm.

You matter too - when being a full time carer it is so easy to feel guilted into thinking that only the cared-for person matters. Please try and resist this.

I am sending you lots of good wishes.