What should a carer do?

Living with Parkinson's Carers, friends and family
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I’ve posted on the forum a few times and have read posts many times from carers, mainly as support to reassure me that there are other going through this! Thanks all!

My wife was diagnosed with PD over 5 years ago. Life has been difficult since then and I don’t think she has really responded well to the usual Levodopa type medication.

She has been under the care of a new consultant for the last 9 months or so who has treated her as a PD sufferer but has always said he has kept an open mind about her diagnosis. After a few problems last week she was admitted to hospital and the consultant has taken the opportunity to do an MOT as he calls it.

I’ve always said that one of the issues with my wife’s care is that no nurse or consultant has ever seen her for 24 hours. they see her for an hour at best and only when she is reasonably “good” because if she is feeling less than good, she simply doesn’t attend appointments.

After observing her for a week now he thinks that Lewy Body Dementia is more than likely. he has changed meds on this basis and she is now on rivastigmine.

For my part, I’ve taken the opportunity to relax and reflect and, although I am worried about the future, I’ve enjoyed the last few days.

The consultant and I spoke about the future a few days ago and the possibility of a care home for my wife was discussed. We are both still young though (early 60s). He says he has gently dropped the possibility into a conversation with my wife, although she has no recollection of this,

After a few days when she seemed to be responded well to new medication, I went to see her yesterday and she had relapsed. Lots of delusions and simply argumentative from the start. I walked out of the room twice. I got back to the calm of my home and I realised that this calm is what many people will enjoy. Simply getting on with their lives in a pretty relaxed way. Not thrilling or exciting but just muddling along. It made me wonder at what point could a carer say “enough”. Enough of the sleepless nights, enough of the delusions and hallucinations, enough of having to think for two people, enough of the lifting, enough of not being able to leave the house for more than thirty minutes alone, or two hours together, enough of starting a conversation only to find that my wife has fallen asleep, enough of the arguments and, probably, abuse?

We have two adult sons. They are very supportive of me and understand the strain that the last 5 years have placed on me.

I might be being totally unkind here. If so please tell me ( “in sickness and in health”, “get a grip” “stop being selfish” etc) as I need some honest opinions, amongst all of the guilt.

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Hello Seansdad
First of all I must say that I admire and respect the honesty in your post. I have Parkinson’s and my posts are generally well received. The posts I receive most criticism for is when I point out that people, specifically family members, do not have to take on the caring role, do not have to do it for ever and a day and that not everyone is cut out to be a carer and that it is alright to admit that. I get told I don’t understand etc etc. It is however precisely because I do understand that I will keep on saying it because carers have a right to know. I have never suggested these decisions are easy or that the system is perfect but that doesn’t alter the fact that family carers can choose not to undertake that role at all or indeed that they are not able to give it up if it gets too hard.

The fact is there is a widespread assumption, often unspoken but which brings a pressure to bear, that a family member will take on the caring role. At the beginning symptoms are often mild and the role manageable without undue difficulty but as time goes on and symptoms worsen it is, as you are finding, getting harder. The fact is for many carers the role is exhausting, relentless and can go on for many years and they may choose to deny it, but not everyone is cut out for this very difficult role. Indeed one of my early decisions was that I don’t want my family to take on the caring role for me and I have taken what steps I can to try and ensure this doesn’t happen - as an aside it has also meant having some honest discussion so that they understand and are in agreement with my thinking. Too many shy away from these difficult conversations but it can make all the difference and may even prevent the situation reaching crisis ;point, but I digress.

To get back to your post. There is nothing in the marriage vows as far as I know where the ‘in sickness and in health’ says this has to be at the marital or family home. As for getting a grip, that is precisely what you are doing. The few days on your own while your wife was in hospital has allowed you to see the situation for both of you with an objectivity that was probably previously hidden and you perhaps have a better appreciation of what your future may look like. As for being selfish. There are two of you in your marriage and your life is as important as your wife’s, you matter every bit as she does. You may choose to give over much of your life to your wife’s care and that’s perfectly fine but if that’s not for you, that decision is yours to make.

Only you will know the best decision for you both and the timing. Maybe the right time is now for your wife to move into residential care (and note I don’t say put her in a home as if it is some kind of prison sentence when it is actually a carefully considered decision and you will look for the most appropriate placement) An individual can blossom in the right setting with things going on around them, people to talk to and all their needs met rather than being at home relying on in this case you, to manage all her needs and keep her entertained - which is already causing some frustration. Maybe the time isn’t right and you could carry on with some help or regular respite care for example. The one thing you can be certain of is that you will run the full range of emotions with guilt being top of the list. I know it is virtually impossible but you need to think with your head not your heart.

You wanted an honest opinion and that is what I have given you and I will no doubt come in for a lot of flak for speaking as I have but I say again you do have a choice - that may be to continue the caring role or it may not. It won’t be an easy decision, the system isn’t perfect, the process stressful in itself and you will undoubtedly struggle with guilt.
If you continue to be honest with yourself as you have shown in writing this post, I have every confidence you will make the right decision at the right time for both you, your wife and your family.
I wish you well in whatever you ultimately decide to do.
Tot

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Hello Sean’s dad

Firstly I am responding to you carer to carer. I am sitting at home in the sun whilst my husband has reached the last few days of his life after nearly 20 years living with Parkinson’s.

. Additionally during my working life I worked with both carers and pwp. Some of the most frustrating clients I had to work with had a diagnosis of Parkinson’s with lewy Body Dementia The dementia kicking in at the time of diagnosis rather than 10+ years down the line. I always felt for the carers with these clients as LBD can be particularly challenging with great carer burden.

We have had significantly challenging times and I received counselling during the worst of it. However because of the support I received and my own self care practises I was able to carry on. Additionally due to the very complex nature of my husbands Parkinson’s and associated co morbidities we received CHC funding with paid for care. This level of support is not easily available currently.

I received many comments from others about my decision I am sure they were well intentioned but I found them inappropriate.

Given my experience on many levels my advice to you would be rather than agonise over life changing decisions whilst try to process the possibility of your wife going into care, talk to your supportive sons and get expert help in the form of counselling, either through the forum or possibly your GP, although I suspect there might be a long wait. Carers Uk offer counselling and other charities as well Here within your own safe space with your counsellor you can gently work through the difficult emotions you are currently experiencing and find resolution and peace of mind.

When you have been married a long time these changes to your marriage will always be difficult coupled with grieving for your wife as she was and the life you thought you would have.
Hopefully these actions will enable you to make the right decisions for you and your wife and you will be able to look back as I do now with no regrets.

The love you once had for your wife will still be there but in altered form.
The life you had together before diagnosis will still be there. Your future is still full of possibilities.

Much love to you

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Hello yogalady
We have not always agreed and that’s fine; debate with differing views is rarely a bad thing. However today that is not why I am writing. Today I write only to say how sorry I was to read your husband is nearing the end of his life and acknowledge the difficult and challenging times both you, your husband and family have faced over an extended period of time. You have given your all and I hope when his time does come it will be peaceful. I can only imagine the range of emotions you must be feeling and there is not a lot one can say at these times that doesn’t sound cliched. So I will simply say that I send you my best wishes at this difficult time for you all.
Tot

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It’s really hard as a carer to a husband who has Parkinsons and now PD dementia. We started getting carers in twice a day - I find this helps relieve some of the burden and it allows you to go out knowing someone is with them. My partner has also lost much of his mobility - which in some ways makes it easier because once he is up and sitting in his chair and has been to the loo, me and my son can go out for up to two hours knowing he will be safe. Before this, when he could get up and walk independently, we were so worried about falls and so on.

You might try this first… it’s also less expensive than a care home option. At least untill you find a suitable care home which canbe a challenge.

I’m fortunate in that my 19 year old son is sharing the care at home - he is adamant that he would rather look after his dad than him go into a home.

On thing is that our consultant said he would really deteroriate rapidly if he was to go into a home and having looked at a few, I would think thattoo…my HWP would be the most lucid in many of the dementia wards of most nursing homes. But, once his mobility is reduced so that he would need a hoist, we would have to get him into a care home as we have been told by the OTs that we have no room for a hoist in our flat.

The other thing you have to remember is that even if your wife went into a home, you will still have them ringing you if something happens … and also, for me, I know that I would still get stressed ifI went into the home and saw things not being done as i would like or my HWP was really unhappy…

The money thing is a big issue… so do consider that…homehelp might be a way forward… plus having a hospital bed set up and having the bedroom to myself is a game changer. And having our son living here and helping of course. If I was on my own, I just couldn’t do it - even with carers coming in.

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Thanks for your replies all.

@tot I’ve read a number of your contributions over the years and thank you for this one. They say that the simplest things are often the most revealing and your comment that both mine and my wife’s lives have equal value really struck home

@yogalady I have had counselling before and am currently receiving support from a psychologist from the same hospital that my wife is in. the team at the hospital are keen to support both of us throughout whatever comes next. We were truly fortunate to be in a location which has this facility.

@mscoachbeth Our sons have been a huge help and helped their Mum whilst they lived with us. I have always been keen however that the diagnosis should not interrupt their plans. Sharing care with them was much easier but it undoubtedly had an impact on their mental health.

Since my original post, the rollercoaster has continued. Two good days followed by a difficult day today which started with my wife needing me to visit at 8;30 this morning. She was distressed, not understanding why she was in hospital and suggesting that I had put her in there as some form of punishment.

Better when I visited this afternoon though. The hospital are having an MDT meeting tomorrow which might illuminate what happens next.

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Hello seansdad

Thank you for your reply, it is always gratifying to hear that something I have written has struck a chord. Replying to any post can be fraught with pitfalls, all you have is what that person has chosen to divulge about their circumstances and you don’t know them - although I do sometimes wonder if I have passed one or two ‘on the street’ as it were, although I would have no way of knowing even if I had. I am very conscious that I am often reading between the lines, hoping there is some accuracy in what I write and if appropriate, which is frequently the case. I will always make it plain it is my view based on what they have written. I do very often say that I try to be honest in my replies. I don’t know if people realise this but it is very rare for me to tell people what they should do. I will make suggestions, point them in the right direction and sometimes, as I did here, illustrate my point by relating my own experience but ultimately the decision has to be theirs In fact I don’t personally think of what I write as giving advice, rather it is usually to offer a different perspective, a different way of looking at their situation. Your post was interesting and a little bit different because, it seemed to me, you were grappling with yourself and how those few days away from your wife showed you a glimpse of your old life, when you and your wife shared your lives in a way that has probably become comfortable over the years and which during those few days made you realise just how much of that life has gone and gone for good. I think that has made you question if you can continue the caring role because your wife is becoming a person you don’t recognise - she looks like your wife, sounds like your wife and has all the mannerisms of your wife, but the essence of her being, the part that made her special to you, seems to be slowly slipping away. Like it or not that changes everything. Caring for your wife when you could still talk, share, laugh whatever is far far easier than the one sided conversation you are moving towards, a future where the decision making will all fall to you, a future where you will grieve for your wife who is still alive but no longer there. That is the reality and you have been brave enough to see that and chosen to address the issue head on, but in doing that you have come to a crossroads. You asked what we thought and the replies you have received have all made valid points but are very different. But let’s be clear here whatever the outcome of tomorrow’s MDT it won’t be just about your wife, it will be about you and yes, your sons too.

You may well have not come to any firm decisions yet but if you are having the slightest doubt about either your ability to manage your wife’s care or indeed if you can continue to provide that at home. Then you need to speak up; otherwise the assumption will probably be made that you can just keep going.

This has turned into another lengthy post but I feel very strongly that carers need to look at themselves and be honest about not only if they can continue the care they are currently giving but do they want that. It is possible for the caring role to continue at home if appropriate services were put in place to support you, equally you could continue the caring role in a different way if she moved into residential care but that leaves the key question do you want to continue to be your wife’s carer - or give up that role and just be her husband - you can still be involved but the day to day routines, some of the stimulation she will need, can be done by others and you will have time to have some life of your own - which brings me full circle - you and your wife together make up your marriage and with your sons make up your family. Your wife may no longer be able to make decisions for herself, you as a couple or as a family; the implications of this on you and your sons matters every bit as much as any decision made regarding your wife.

I hope the MDT goes well and I hope you find a voice to make them aware of your thinking however muddled that may be at the moment. If you feel able. Please let us know how you get on.

Tot

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@Tot Thanks.

I’ve already realised that our relationship had moved on and is now more patient and carer than wife and husband. That has made me think that my role as a carer is to make sure that My wife gets the best care possible and to recognise that I might not be the best person to provide that. I’m sure that my wife won’t see it that way, but her degree of cognition is such that the choice might be taken out of her hands. I’m think that all of the family recognise that a care home will be involved in my wife’s care at some point, and it may fall to me to determine when that is. It makes sense for that decision to be taken before I get to breaking point. Lots of thinking to be done……

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Dear Sean’s Dad

Just very briefly to say I hope MDT come up with a workable plan for you. Also really pleased you have clinical psych on board. As you work your way through and process all the possibilities I am sure you and your family / hospital team will eventually find resolution.
All through my time as a carer I have fought really hard to get the best possible care. I feel really strongly, when the care system is in such disarray it is only but calling out bad practise that standards will improve.

I wish you well

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Hello, you may already have a different plan following the MDT meeting but if not, you can contact your local council and request an assessment of care. Once that is done they may be able to sign post you to OT to see if theres anything around the home that could be changed to make it safer etc. If appropriate it might be possible to get a carer visit in the morning to help with that routine etc. which might give you a bit of time. I definitely think having other people in the home at the earliest opportunity, even only a cleaner or a private carer to sit with your wife for two hours a week is a help, both for you and if further care is needed later its less of a disruption for PWP.

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The rollercoaster continues…

We’ve now had the second MDT meeting and I have asked the Ward sister to give me her honest view. She said that even with 30 staff at her disposal on 8 hourly shifts, they have sometimes found it difficult to manage my wife when she is agitated. I’ve previously thought that she was OK about 70% of the time and that, if they managed to smooth out some of the peaks and troughs of the symptoms, I could manage with a care package to look after her at home.

I have kept a journal of my daily visits which recall my thoughts when I am there. Looking back over the last three weeks It looks like I have been kidding myself and actually 70% of the time, she has ben pretty confused and quite often difficult to deal with.

Even taking onto account the fact that she is in an unusual environment and only recently had a medication change, this has really pulled me up short. Is it better for her to be home with a care package and wait until we reach a crisis point, or would it be better in the long run for her to have 24/7 care on discharge? I spoke with the psychologist who also attended the meeting and she said that everyone thought that I would struggle, now that they have experienced what work is required to look after my wife every day.

If I go for the latter option, there will be resentment (hers) and guilt (mine). am I strong enough to deal with that mentally in the knowledge that it should be better to have 24/7 care from those trained to provide it?

In my heart, I would like to bring her home and at least try, but my head is scared about the possible outcomes for her and me.

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Caring for someone with complex needs like Lewy Body Dementia is incredibly challenging, and there’s no one-size-fits-all answer. It’s important to take care of yourself too, your well-being matters just as much as your wife’s. Reaching out for support and considering options like a care home isn’t about giving up; it’s about making sure both of you can live as comfortably and healthily as possible.

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My only experience of a care package is carer visits per day x 4, 30 to 45 mins at each visit, depending on time of day. Extra care can be granted on discharge from hospital which lasts for a few weeks, with the hope that the patient would settle at home in time. So maybe ask the MDT exactly what the care package would offer and ask yourself if you could manage the rest of the time when no carer is present? If there is a risk of falls or wandering there could be many hours of no care at all as earliest call could be 8am and latest 8pm. Im not sure of any variations on that as a care agency provides the care

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it’s great that you’re advocating for the best possible care

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Hi gang

Things move on….

Deciding what to do next has been really difficult but my wife and I have had some honest and really quite tender conversations about the future. I think we are both clear that a care home is going to be involved at some stage and many tears have been shed at that prospect.

I have seen glimpses over the last couple of weeks of the women I married, thoughtful, smiley with a dry but wicked sense of humour. There have been some rough days too but whilst those glimpses are still there I decided that I couldn’t let her spend the rest of her days in a care home. Those days when she is “good” should be spent at home and to see her elsewhere would simply crush me. In a weird way I have rediscovered my love for her and have remembered what it is to be her husband.

The care package is currently being planned to potentially include 45 mins morning and night to get her ready for the day ahead and the night to follow, with some days each week at a day care facility. Respite weeks have been discussed too.

The last four weeks have enabled me to see that I am doing a decent job and that if the care plan fails, it won’t be for want of trying and it won’t be because I could or should have done more. Our future isn’t what either of us wanted but we need to make the best of the time we have and I needed to shed at least some of the guilt to do that.

thank you to everyone who has contributed to this thread. you have all helped me see the wood for the trees, get a sense of purpose and face our uncertain future WITH MY WIFE (not my patient)!

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Hello seansdad, if I say I was delighted to read your post I am sure you will understand what I mean. It was a lovely post bourne out of much soul searching and anguish but it was lovely to read you have got some much needed support which I am sure will make a difference and more importantly you have ‘rediscovered’ your wife - the woman you love and can now see that you are capable of doing an alright job and that’s just fine. The point is seansdad, is that you were brave enough to look at your circumstances head on, acknowledging the difficulties, your feelings about it all and the impact on all parties involved; that has led you to make a pro active decision based on the best information available to you at the time. If you continue to do that you can have confidence in your decision making at any stage as doing the best you can by your wife, your sons and indeed yourself - and doing the best you can is good enough . I know it won’t be easy but I really do hope it works out for you. It would be lovely if others in similar circumstances could take something from your posts.
I send my very best wishes to you all as you begin this new stage in the life of your family.
Tot

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As I said in my previous post, things move on….

I posted to start with as a call for help and as a means to vent what I felt at the time. I think many posts on this forum are a combination of these. Looking back I see that this thread is starting to resemble the sort of “journey” that many carers will face, so it only seems right to continue,

Having made the decision on Tuesday to bring my wife home, the rest of the week has been like this.

Wednesday- my wife was getting her hair done so after a little bit of anxiety to start with, she enjoyed doing this as she always does. the hairdresser came to the hospital and I acted as assistant and sweeper-up. Otherwise relatively uneventful.

Thursday -my wife had a good sleep and was in an excellent frame of mind. We had a lovely conversation about our youngest son who is currently performing at Edinburgh fringe. I said I would finish work early on Friday and come to take her out for coffee which would be the first time she had been away from the hospital in a month. she said she would look forward to that.

Friday started with a call from my wife and although she said she had a bad night with lots of shouting out, she said she was OK and seemed to be in a good mood. She called later to say she was bored and could I come earlier than planned. she still seemed to be OK though. I said that I was making a list of DIY jobs to do before she came home and asked if there was anything she wanted to add. she said that I just look after myself and our little dog.

About ten minutes away from the hospital she called again to say that they weren’t letting her out and could I come now. I said I was on my way. When I got there, I turned the corner towards her room and was about 20 yards away. I could then hear her shout “ I WANT TO GO HOME NOW” . when I got to her room, she was struggling to get out of the chair by herself (her balance and mobility isnt great). she told me to take her home now and I tried to explain that I couldn’t do that because the care package hadn’t been put in place yet. she became extremely angry and rude at me and the nurses who had arrived,mob-handed, by then. I tried to hold her hand to stop her from falling over but she told me to get off. she was rude to both me and the nurses.

Her face was furious. Like most of us, my wife gets angry sometimes but I had never seen such an abrupt change of mood in her, and the only time I Had seen this before was in my Mum who had dementia shortly before she died earlier this year.

It shook me to the core. I had to sit down and the nurses kindly made me a coffee. One of them stayed with me in a little room around the corner to make sure I was OK.

When I got back to my wife’s room the doctors and nurses were with her and tried to calm her down. she was complaining that they had locked her in her room, which plainly wasn’t the case.

I sat in the room, shaken, but she barely acknowledged my existence. the nurse was trying to engage her in conversation but she wasn’t interested and I could tell from her tone that she was still furious.

After an hour or so, and after being told by the nurses that there was nothing I could do, I left. Sitting in the car, I realised that I couldn’t bring her home as planned. the doctors had explained to me that they had experienced this before during her stay although usually in the middle of the night. this was why they had been reticent about me bringing her home. Amongst many reasons, I think that bringing her home would expose both of us to risk. risk of hurting herself if my wife “flips” and I can’t calm her down and risk to me if she made allegations towards me like she had done with the hospital - she has made totally unfounded allegations of domestic violence before.

I’ve decided that I will tell her this today. I’ve emailed the consultant to tell him this and he has said that his team agree that residential care for my wife would be the best course of action for both of us. For the protection of both of us, I plan to have a nurse in the room when I tell her.

I know that there will be glimpses of my wife to come and these will be lovely and painful in equal measure. But I simply can’t risk that sort of crisis to develop at home where there wont be multiple doctors and nurses to calm the situation, and based on the joint experience of both the medics and now me, It seems to be only a matter of time before that would happen. I also know that no care package could be devised to cover that possibility.

Thanks for getting this far. Knowing there are folk on the other side of the keyboard who understand really does help.

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So sorry to hear this after your lovely post seansdad, no-one could have done more.
I have sent a pm to you.
Tot

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Virtual hugs going your way, Seansdad. Its the update i wished you werent going to post but on the other hand, what happened is so typical of the struggle, unpredictable nature and downright unfairness of Parkinsons Disease. I understand where you are coming from and in relation to the home care plan being insufficient to cope with a future reoccurrence, of that you are correct. The care needs change so quickly but the social care system cant keep pace or is not in any way understanding of the condition.

Please mind yourself, its not at all easy.

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Hello Seansdad
You have been in my thoughts. I hope you are ok or as ok as you can be in the circumstances.
Tot