Support needed please

Hello everyone. I’m feeling a bit lost and maybe a tad pathetic right now, which isn’t like me, wondered if anyone has any experiences or suggestions for ways to get a break from caring. My husband has had pd for 12 years, he’s 77 and 22 years my senior. I totally adore him. Having done all the therapies and all the bucket list things he wanted to do, 2 years ago he took to his chair and said he’d had enough of doing exercises. Obviously this has had a negative effect on his parkies but I have had to accept his choice because I’m not 77 with parkies so I support him and do whatever I can to make his days better. He can be fab symptom wise and awful too, anxiety is a big problem for him even tho he’s on anti anxiety meds, he collapses often and ‘falls’ every day then we have learned to wait until his frustration and anxiety calm down before we try to get him up. He wakes up twice a night for a wee and needs help. The good side of the age gap is that I have the energy to cope with the workload although sleep deprivation affects that strength. He has children but for various reasons they aren’t able to help much. I, desperate for a break, my health is suffering and it’s the emotional exhaustion that is getting too much. I miss him so much and he’s quiet and doesn’t want to do anything. I recognise that I need a break to recover some emotional energy because being on alert 24/7 is so hard and each time he falls I’m scared it’s going to really harm him. I had 3 nights away in the last 16 months. I do get to go yoga and walk the dog and meet friends here and there but I’m always mindful as to whether he is ok so I can’t switch off. If a fairy waved a wand I’d dearly love a few nights away with the dog in the camper, peace, just restorative peace but how do I make that happen? Respite carers in the home at £22 per hour for 3 or 4 days is cost prohibitive and it’s a lot to pay someone to watch the telly as J is mostly independent but needs someone around in case he falls and hurts himself. He doesn’t want to go day centre or care home, I understand that, he’d hate it and I can’t put my needs over his happiness.

Is anyone else in this situation or has been? How do you get a proper break? Sorry for going on and thanks for listening. X

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Hi Castle, you can have my sympathy. I know that won’t help though. I have Parkies and I am a carer for my wife so I can see the problem from both sides. Sometimes you to go against your instincts and just go out for the afternoon, having talked to your partner. It is in both your interests to keep your sanity. Maybe there is a local Parkinsons support group that can help.
Good luck.

I understand exactly how you are feeling. My husband (with parkies) is 87 and 22 years older than me. I would love to have a break because I recognise that I am getting exhausted and my health is suffering. He falls a lot, is incontinent and gets confused easily. I went out for an optician’s appointment last week and came home to find him on the floor with a cut to his head and the beginnings of what became an impressive black eye. I feel angry that his attendance allowance has gone up by 45 pence a week to £85.60, yet if I find a care home that will take him for a week so I can have a break, I will have to pay over £1,000. More exhausting than looking after him, is the constant round of telephone calls I have make to try to get any advice. I am still waiting for a carer’s assessment. Like you, I sometimes think I am being pathetic and then I make a list of everything I have done that day, and I am amazed that I am still standing. I hope you find an answer, but if it helps, you aren’t the only one, and you definitely aren’t being pathetic!

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I am in the same situation but with my mum who is 85. I’m 55. She has had parkinsons since 2012. I lived overseas until June 2020, when she cuaght Pnuemonia and was in hospital. I came back to help her temporarily when she came out of hospital as it was during the pandemic and I didn’t want her to go into a care home but over 12 months later I’m still here and have given up my home overseas to move in with her and care for her. This is by far the most challenging thing I have ever done in my life. I can’t even leave her to go upstairs to the loo, as I come down and she’s tried to get up and fallen over. She has had pnuemonia 3 times now and every time she goes into hospital she loses more weight and seems to get worse not better.

I managed to apply for Universal Credit as it is impossible for me to work properly but my claim was disallowed as I have savings more than £13,000 (these were to help my son to go to university!). I managed to get the carers allowance of £67.80 a week, which goes nowhere. The Parkinsons Nurse in our area is on long term sick leave so unavailable. It’s incredibly difficult to get through to other people due to long waiting lists and long waiting times on the phone. I just can’t spend an hour on hold on the phone when I’m watching mum who forgets she can’t walk and tries to get up every few minutes to talk to the extra people in the house.

We do have carers that come 4 times a day to help with her personal care but it’s a huge challenge still.

The local parkinsons support group is for people with parkinsons and not their carers. They meet during the day and I can’t leave mum to attend it even if it was for carers. I am considering setting one up myself in the evenings when our parkinsons carees have gone to bed but still it means leaving them alone in the house even if they are sleeping, as they still have hallucinations and wake up calling out.

It’s challenging. Writing this down in this forum has been helpful and knowing there are others out there in the same situation.

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Hi Karens,
We are sorry to hear things have been difficult of late, but we are glad to know you are already seeing the benefits of sharing your feelings with others who understand. You are sure to hear from our lovely forum members soon, but we also wanted to make sure you were aware of the resources on our website, like this starting page with some information on financial help for carers. You are likely to be aware of some of this, but we recommend using our search function to expand from there, where hopefully you can find some help you didn’t anticipate. And even easier, we have a free and confidential helpline at 0808 800 0303, staffed with advisers who are ready to help with everything from medication questions to local carers groups like you mentioned starting. They can even assist you with that, and we hope you’ll take advantage of their incredible array of talents. To be clear, you do not have to be a PWP; they are there for all affected by this condition.
We hope you’ll accept a warm welcome and best wishes from the forum community and moderation team.
Mod Team

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Thank you so much for taking the time to reply and my apologies for the delay in replying to you. I read your kind words and experiences and just haven’t got round to replying until now. I twisted my ankle yesterday so am having to sit a bit more and that’s allowing me to catch up -every cloud etc eh!

It’s really hard isn’t it, to balance our needs for a rest vs the unbelievable cost of respite care. My OH would hate anything residential so that would temper any pleasure I got from having a break, I’d be sad for him. I suppose for us ‘young uns’ it’s partly the price we pay for our age gap too - on one hand we fortunately have more energy and ability to care and on the other, we want to do stuff with our lives too and our husbands don’t feel like that now. Striking the balance is very difficult but we love and that conquers a lot I find.

If your husband has attendance allowance I expect you know you can claim carers allowance? I was advised to fill out the form as though every day is your worst day. I think only people with, or caring for, someone with PD can comprehend how much symptoms vary and how quickly too!

The other thing that’s helped us is getting referred to the incontinence service. They’ve been brilliant and given us a weird device that’s like an external catheter so I get an undisturbed night. We use it when the tiredness gets too much as it’s a bit of a faff to use.

I guess what we have in common, along with the other carers reading this, is being constantly on alert and the fear of losing our loved ones whilst still maintaining and respecting their need to be independent and ours too. It’s very hard.

I hope some of this waffle helps you. How are you getting on now, seeing as it’s been some weeks since you replied x

I’m sorry that I haven’t replied to you before. Things got really bad for us recently and my husband is now in hospital. He started suffering hallucinations and delusions and then he fell at home and I had to call an ambulance because he couldn’t move. The paramedics took him into hospital for tests and two weeks later he is still there. He is very anxious and distressed and he is only calm when I visit and sit with him holding his hand. I hope you are coping and life isn’t too difficult for you.

Oh Susan, I’m so sorry to hear that news. It must be beyond awful for you both and my heart goes out to you. My life is a breeze in comparison!

James gets anxious about things when I’m not with him which is lovely in one way bevause I am able to help him but difficult when I want to do something different and no one else will do.

I know there’s very little I can offer. Hopefully the hospital are recognising that you are a vital part of his recovery and they’re including you in his care. I find on the most part they’re pretty clueless about parkies but I think that you have to live with it to understand.

Send news when you can and any time you need to talk to someone that unertstands a bit please get in touch.

Thank you for your reply. I’m going to the hospital every afternoon to sit with Michael. Visiting should only be one hour, but the nurses let me stay for longer. He is still anxious and delusional. The plan is to move him to a community hospital for rehab as it will be a calmer environment for him. I’m not sure when that will happen. How are you getting on? Have you got a local carers group or Parkinson’s group to give you some support? I hope all is well with you.

Hello to you all
I have just caught up with your posts and my heart goes out to you. Sadly I can’t offer much in the way of practicalities. I have Parkinson’s. I am also only too aware of how difficult being a carer can be. I couldn’t do it long term which shocks people when I say that but I have seen many times the physical and, I believe more damaging emotional price paid. This is in absolutely no way a criticism merely an observation but most find themselves in the role of carer almost by default. It starts off often with quite low level support and slowly, over time the sheer relentless nature of the caring role and fatigue it generates not to mention all too often shrinking social contact reveals itself. It comes with a heavy cost and one I am keen to protect my own family from. Will I be successful? Who knows, only time will tell. I’ve done my best to do what I can to put measures in place but I have no idea how my own Parkinson’s path will play out. I think living with Parkinson’s, or indeed any neurological condition, or being a carer for such a person, is two sides of the same coin and whichever way the coin is tossed and however many times it is repeated, there is never a winner. For me, I do sometimes struggle with the knowledge that whatever I have done to protect my family may not be in the end enough, through no fault of my own. That is a terrible sadness to live with and one I can’t afford to dwell on too much; my energies have to be on coping with the challenges Parkinson’s brings each and every day. This won’t make any difference to the difficulties you are facing but I am sure I am not alone in being a person with Parkinson’s who would like nothing better than to have a way to prevent someone you care about having to take on this role which can be so, so lonely. I just wanted you to know that. You didn’t ask to be a carer but then we didn’t ask to have Parkinson’s either. There are no winners but don’t assume we don’t know the price you pay for what you do, or the price we pay for understanding that.

PS I did have one thought about Karen’s comment on support groups meeting during the day and possibly setting up an evening group which brings its own difficulties and I don’t know how you could sort it out but what about a zoom meeting or similar?

Hello Karen, I am so suprised that your local meeting is only for PWP and not their carers as well, our group looks at that you are both come part and parcel of each other. The person with Parkinsons needs help and support as much as the carers do also (and sometimes more at times) as honda300 says you both have to have you sanity. sorry I don’t want to critisise but I think your group should have a re-think of their structure
Take Care. Hope you can get some satisfaction from somewhere!

Try Age UK who offer a respite and sitting service. Not certain if this is in every area. I used their sitting service which was brilliant . I think they charged £6 per hour but this may have changed. They also offer respite service in your home for weekend or so. You are entitled to so may hours per year but they come out and explain everything to you to you. If like me your husband suffers from anxiety you may have to break him in to the idea, however if you are able to walk the dog and go to yoga as I still do. Make the most of these times especially when walking the dog an opportunity to practise mindfulness strategies.(Sorry a retired yoga lady talking) Think about your own self care and how you can incorporate times in your day just for you. I now practise yin yoga on U tube daily, a meditative form of yoga I have found invaluable.

My husband has been diagnosed 16 years and has funded care at home. This means we now have a carer in the house 24/7. This has bought its own challenges and adjustments also I am still grieving for the man who was my husband even though physically here is still here. To be positive though his care is as good as it can be and he is happy enough.
I know only too well how difficult caring on your on can be and I hope you find some form of respite soon.

warm wishes

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Hello Castle,
I understand how you are feeling, my partner and I met when we both lost our spouses to cancer 10 years ago. A few years later his sight got worse due to Glaucoma and then he was diagnosed with Parkinson’s. We both lived in our own properties but 2 years ago I had to move in with him for 6 months as he couldn’t manage. He then got a water infection and was in hospital for 2 weeks followed by a stay in a care home for a month. After this we decided that he would go in a small independent living care home (only 8 residents) and I visited him 3 or 4 days a week. Unfortunately then Covid struck and he was getting confused, lost a stone in weight and was desperately unhappy, crying on the phone to me. Last August I said he could come and live with me and we had been managing well until a few months ago when I was feeling very tired and was diagnosed with Anaemia. I’m now in the situation where he has bladder incontinence and possible Lewy Body Dementia. We have no family nearby to help although I have a good friend who sits for a couple of hours so that I can get outside and do some gardening once a week. I’m finding great difficulty with supporting him when he gets up in the morning and from a chair. He is generally okay once he gets going. I had to employ a carer to stay a couple of nights when I went into Hospital recently for tests and she can manage a couple of mornings a week to shower him but she suggested I have various aids fitted around the house. As he still has his own flat I’m wondering if a live in carer there will be a better option. Although we will both miss each other I can visit him 3 times a week. Unfortunately he can’t make a decision and gets very anxious when I bring up the subject. I do know though that he isn’t going to get better. I am 75 and my partner is 79.

Tot, you sound like an amazing person and thank you for your post because it’s really good and helpful to hear from someone with parkies. Discussions within Parkinson’s partnerships are difficult because there’s emotions involved and no one wants to hurt their loved one. So your insights are a very good.

We are having a relatively good patch here which we are making the most of because we are able to do some social things. The lack of social interaction and loneliness is the hardest thing so I’m grateful for the reprieve when there’s a visitor or I get to have a little break away but I miss him terribly whenever we are apart. I adore the bones of him!

Yoga lady, I’ve discovered yoga too and find it very helpful. I do zoom classes in the garden and together with Pilates it has eased the back pain I get from trying to lift/move my man.

Susanmary I’m glad the hospital were helpful to you. How are things with Michael now. I think of you.

Parkinson’s has good spells and bad spells. I was struggling when I wrote the initial post and now things are in a relatively good phase so I’m enjoying it while it lasts!

Thanking you all for your support x

Hello Castle
Glad to hear you are in a goodish phase but was concerned to read you get back pain from trying to lift/move your man. Have you had an assessment? Don’t you have any equipment? It is important you protect your own health if you are going to continue your care role as you wish.

Hi what can I say, you’ve described my life. I didn’t think anyone else was going through the same as me. I know exactly how you feel my darling hubby has PD. I’m tired, lonely never switch off from worrying about him. He’s in his own world sleeps most of the day with tv on. Iv asked for help ringing PD nurse & a referral was made to adult care. That was 6weeks ago & nothing in place yet. I miss him & our old life. But this is what we’ve been dealt with. Day by day is all we can do