To all the carers - How are you feeling today?

Living with Parkinson's Carers, friends and family
1

My life wouldn't be complete without my wife, Dawn.  We've been together 32 years and it's a daily balance between me being fiercely independent to needing a carer's touch keep me safe.

The One thing that gets to Dawn more than everything else is every day when she meets people, they all ask "how's Ken" Never, how are you?  

She feels ready to explode at the lack of empathy for her position with PD getting all the attention. She takes great care with her diet and activity and relevant potions and lotions to such great effect she looks to be in her 30s rather than in the full throws of the men on pause.  Everyone complements her on youthfuness but the fact remains she's feeling drained by all the effort involved with PD.  

I now try to ask her daily, how are you today and stand close to accept my part in the saga and help the best I can.  On a cheeky side-note, Dawn is not amused that she's on the Saga mailing list when I'm not.

The purpose of this post is to ask:

How are all the carers today and what helps give you a pick up when it's needed?

2

Sadly nothing picks me up at the moment.   My husband is going through a particularly bad patch with this illness, and I can only see bleakness ahead.   Luckily for him he is a positive thinker, whereas I'm always totally negative.   Before anyone shouts at me, we can't help our emotional make-up, and believe me I do try to remain positive in the face of adversity.

I'm not sure I have the courage to watch my husband's inevitable deterioration.   He knows this and says I must do what I have to when I think the time is right, i.e. care home.

Sorry to anyone I offend with these thoughts, but I am at rock bottom right now (and yes, I am having outside support, although no relatives/friends nearby).

 

 

 

3

I am a carer for my wife, personally i don't  like people asking me how i am because i have to think about it !!!!!!! I feel i have to be positive at all times and try and encourage her in everything she does and i try not to think to far into the future.She is a stronger person than me because i don't think i could handle having PD as well as she does

                           all the best to you Kendo and Budgies

                           Billywhizz

4

Sometimes the PWP is so wrapped up with how to cope with their daily grind we can miss the horror that PD puts our nearest and dearest through.  

 

 

5

Hi Budgies,

Sorry to hear things feel so hard right now. You said you have outside support, but if you're ever needing more calling our helpline (0808 800 0303) is an option, they can provide a listening ear.

Best wishes to you and your husband,
Alethea
Digital Team

6

I agree, anyone I meet asks how my husband is, I often feel insignificant. I always reply as a doting wife should be when I really want to say he has become a nasty, selfish b*****d who has no thought for anyone else but himself. I have 3 of my 4 children still at home and they are always complaining to me about him being nasty. I took him to the doctors recently and he was asked if he was worried about anything and all he came up with was him and his PD, even though one of our children is autistic and has mental health problems which I literally provide 24 hr care for her. I sleep in her room to keep her safe. He is always saying I'm stupid , an idiot, I never do anything for him etc etc. if I leave I will be the heartless bitch but if I stay I think I will lose the will to live. Yes I can get respite for him if we can pay the first £75 a week which we cannot afford. Really don't know what to do for the best.

 

7

Thank you for each of your considered responses.  I feel there is a lot more I need to reassess with how my wife is feeling.  This could be a valuable wake up call for me as I'd initially misread the potential for quite how frustrated my wife feels.  It's clear now this is not just about being asked how she feels but how she perceives herself both with me and others.

8

Hi Mags23,

I've just sent you a private message via the forum.

Best wishes,
Alethea
Digital Team

9

Thanks for your kind words Alethea.   I know it's a taboo subject, but I've been looking at care homes for my dear husband, just to be prepared for the future, should we need one.

Whilst I would do everything I could for him, I'm finding it very hard to face the uncertain future.  I'm not a nurse, nor would I want carers in and out of the house.  I'd therefore prefer round the clock care for him, and feel I could then relax and be better company for him.

Don't know if there's anyone out there willing to confess to the same fears/feelings, but I'd love to hear from you if there is please, then maybe I wouldn't feel such massive guilt.

10

Budgies, I clicked the <like> button because I appreciate your frankness.

My guess is that you aren't offending anybody with your honest feelings.

It's not as if caring is as simple as making a cup of tea.

 

Although you are a stranger to me, I feel very sad that you're at rock bottom right now.

I hope that things improve for your husband, and of course, yourself.

 

It's possible that his condition may improve with different treatments.

Some people are now symptom-free, apparently.

But I guess it's a slim straw to clutch at.

 

I really want to lift your spirits, but I dunno how.

Anyway, you are not alone.

And...you are probably a lot stronger than you think.

I wish you and your husband the very best - cos you deserve it.

 

 

11

Mags, it looks like you are a saint - bless you.

Looks like you need to will, wish, and/or pray for that £75 per week.

You deserve it - so, by hook or by crook, see if you can find a way to get it.

 

I don't mean to seem really callous, but is there any way you can privately discuss

the situation with his GP? To find him a place in hospital, I mean.

Or is that not possible?

Can you get any support from family, friends, neighbours, social work, NHS, etc?

I'm new to this forum, and I'm horrified at some of the suffering revealed in the posts.

So I'm going to do some research and see if there's any support out there that we can avail ourselves of.

Is there no equivalent of McMillan Nurses for PD sufferers and their carers?

(If there isn't, there bloody well should be!!)

 

I care for my best friend, and she is, umm...difficult!!!

In all the time I've known her (about 30 years), she has been hysterically neurotic.

Because of the PD, she is on Ropinirole (aka Requip), and this has worsened her neurosis.

Then she was put on a blood-thinner (Clopidogrel), and that has merely worsened her mental state.

I'm not coping. I give her a ginger-compress for her back, and then she picks a fight with me.

Aaaaaaaaaaaaaaaaaaaaaaaa!!

 

 Hmm, maybe we'll all pull through somehow.

 

I'm not saying that this is the answer, but now I've got mine off to bed, I am going to enjoy some beer and a

movie!

 

And if this post seems a little strange, I apologise.

I'm new here and I just wanna throw hugs everywhere.

Cos we're all hurting really badly.

Big Hugz, Budgies, Mags, Everybody :)

 

12

Budgies, please don't feel massive guilt!

For what? Being human?

Being prepared is simply common sense, indeed, one can argue that you

are very bravely being realistic, despite the pain that it is causing.

And, yes, I have similar fears/feelings.

So don't be punishing yourself, ok?

13

Hi,

     I was diagnosed in Nov 2009.The very same month my Mum went into residential care.She is still there,just.My Dad has taken a downward spiral since.He is now 90 years of age.He is still at home,just.I visit him daily.Am his only family carer.I shave him and look after him,do most things for him.I have power of Attorney.He hangs on at home,unhappy,he is lonely in his dementia.Yet does not desire a care home.After a recent spell in hospital,he now has 3 visits a day from carers and meals on wheels once a day.Yet,it is still me that he needs care and reassurance from.The need to see me,the constant phone calls.The running of his and my mums end of life affairs.I never let my facade slip.His increasing dementia is a wall to high to broach with problems of my own.

     I shave him with increasing tremor whilst looking with gut wrenching sadness at the reflection of my future.He has no comprehension of my condition.Has no idea of my emotional state.So i just carry on,because there is nobody else.The stress eats away at me.His moods and depression stifle my own.Many a time,i cannot breath.So sad with everything,to be lost within lost waiting for the end or something to give.Leaves not a lot of scope for enjoyment.

    Nobody can help.Time has to play out this sad scenario.I often wonder who will go first.I feel time is running out.Following the rut that runs parallel with my Fathers,wondering just how much i can take.As everyone i thought cared,disappears into their own lives.Because they have no answers.

                          I dread each day

                           Today is now tomorrow.

                                 Here again for persecution

                                       Titan

14

Titan, I'm sorry to hear of your situation. That is truly hellish.

"Nobody can help."  That is a very scary situation.

There are, though, 7 billion people in this world, and somebody

somewhere should be able to help you. Have you discussed this with your GP?

Is there no possibility of social work help?

No family or friends that can help?

Neighbours?

 

Bettyblue kindly posted with advice for us to join a support group - maybe that could help you?

Our very own parkinsons.org.uk has a list:

http://www.parkinsons.org.uk/content/support-you

 

I hope this doesn't upset you too much, but it looks like your father is on the verge of

being in 24/7 professional care.

If and when this happens, please don't feel guilty about it.

 

Although my suffering doesn't compare to yours, even I feel horribly

depressed every time thatI wake up.

I always think, "Aw, geez, not this again!!"

So you have my sympathies, Titan, and although your post makes for very painful

reading, it is good that you shared it with us.

Please check out the support pages and see if you can get any help.

All the best.

 

15

Thanks for the kind words kaihoukan.   My massive guilt is driven by the fact that my husband is such a nice, kind man, who doesn't deserve to be shoved into a home.   He's so understanding that he knows I wouldn't be able to cope with carers in and out of the house, and he also doesn't like the idea, although having said that if he had a choice, it would no doubt be to stay in his own home.

I do think that sometimes not enough thought is given to the person who has to tend the patient - I hesitate to use the word "carer", because our PD nurse says she accepts my reluctance to be a carer, and that sounds as if the person doesn't care.   I do care, more than anything in the world, but I have also to accept my shortcomings.   Also - dare I say it - I might be able to look after my husband at home, just about, but I'm not willing to do it.    I would like to try and enjoy whatever is left of my own life, and whilst I would never desert him, and would visit him daily if he were in a home, I would also like to have some peace of mind of my own.

This might sound horrible to others, who continue their daily struggle to care for their loved ones at home, but at least I'm being honest, and true to myself.   I have to believe it takes all sorts to make up this world, and we can't all be martyrs to the cause.

 

 

 

 

16

Hi Titan,

I'm sorry to hear things feel so hard. There is support out there for you  - you can always call our helpline 0808 800 0303, and do look up what kind of support is in your area.

Best wishes to you and your family.

Alethea
Digital Team

17

Hi Kaihoukan

We have information on our website about Parkinson's nurses.

Best wishes,
Alethea
Digital Team

 

18

 I'm unable to provide much help beyond suggesting you take every scrap of experience derived guidance that you feel would help.  

Thank you for all the responses, lets hope some good can come of your posts and they trigger the help you all need.

19

Hello Budgie

I am sorry for your situation.  The thing that leapt out at me from your post was that you can`t face carers in and out of the house.  If you can put into words what part of that would be the big problem, such as uncertainty what time the carers will arrive, it should be possible to arrange things so that they are tolerable.  I know that local authority carers can be very `flexible` about time but you may be able to use their scheme to arrange a local carer to suit you.  If you can afford a private carer for one visit a day you can arrange all of it to suit yourselves.  I learnt a huge amount from ours.  My overall experience of carers was that they appreciate clear guidance on what you want them to do.  `Please wash his hands and face, clean him up, wash his back, put on a new pad then I will give him his breakfast`   In other words, I don`t want you to tire him out giving him a bed bath, He can have a good wash of his front etc after his nap while he`s lying in bed.

I was always at home when the carer came so they couldn`t let themselves in, I could keep an eye on what they did and how they treated / spoke to my husband and they didn`t wander around the house `looking` for things. 

If you can imagine and say what would enable you to feel comfortable and your husband to stay at home it might then be possible to arrange it for you.

Best wishes

Hattie

20

Hi Hattie,

Thank you for taking the time to reply.  

I appreciate your suggestion regarding carers, but the point is neither of us WANT carers in.   I know that we could arrange for them to come in when it suits us, but neither of us want to live that way.    Quite frankly my husband has said he would prefer to go into full-time care rather than that, and I know I certainly would prefer it.

I can't even begin to see myself feeding my husband, washing him down, and all the things you suggest - it just horrifies me, and if that gives the impression I'm a terrible person, then so be it.   We all of us have to do what we feel is right for us, and I'm not prepared to live in a situation that is making me ill.  Neither would my husband want that for me.   He is prepared to do what it takes to preserve my sanity and his.

Don't get me wrong - I'm absolutely terrified of being without him, and living alone, but to know he's being properly cared for night and day, better than I can do for him, would be wonderful.     And in a way I've been "without him" for several years now, as he's become increasingly distanced, especially mentally.