An isolated carer

My wife is 70 and was diagnosed with PD 3 years ago. She started taking Sinemet 2 years ago and still does, although at a very low dose because of side effects after the first 6 months. Her mobility is now very poor with lots of problems getting out of bed or up from a chair, and with getting dressed. PD has also affected her mentally especially during this year. She has always been anxious and prone to depression but now with PD and the Covid pandemic her anxiety and depression are often off the charts. She routinely talks of suicide. There is a lot of blame directed at me.

Worst of all, I think that dementia may be on its way. It is very variable but on bad days if I compare her behaviour to a list of PD dementia symptoms I would have to tick most if not all of the boxes. She herself complains of the mental effects of PD, but she blames them on the drugs rather than the underlying disease. I go along with this because I know that she is especially afraid of the possibility of dementia.

When meeting her neurologist or friends and family she always seems able to rise to the occasion, so I am the only person that ever sees her at her worst which leaves me feeling quite isolated and unsure what to do. Being her only carer has become very time-consuming and extremely draining for me and I know that I will need some support or respite before long. Ideally a woman who would come in to help get her up and dressed in the morning, when the pandemic is sufficiently under control for that to happen safely. However on the few times that I have raised this subject she has become very upset and quite combative at the idea.

The thing that troubles me most is how to address the dementia question. I have thought that on one of her better days I could try to explain to her the indications that I see in her behaviour, but I have not done it because I fear a bad outcome which could make everything irreparably worse. Also on those good days she can seem so normal mentally that I end up doubting myself. Then along comes another really bad day to remind me. Such big changes in mood and mental state!

We have both been married before and I know that she would consider it the ultimate betrayal if I spoke to her children about any of this. Is there anyone on this forum that can offer any advice?

Hello this is a very quick reply for now as I’m short of time but my heart goes out to you and I wanted you to know quickly that your post has been read and I’ll be giving it some thought. However as a starting point were you aware you can have a carers assessment in your own right? Contact your local council to find out more also suggest you speak to the help desk to help you decide what’s best to do. I will have a think and come back to you. Take care.

Hi @spero :wave:

Welcome to the forum and thank you for your message. I am really sorry to hear about the difficulties you are facing as your wife’s condition has worsened. Caring for somebody with Parkinson’s is not always easy, but we and the other members are here to support you too, as well as your wife.

We have a dedicated section for carers, friends and family members on the forum so, if you haven’t already please consider taking a look and you may find some members with common ground in there.
You can find this at []

I am sure others who are in similar positions will be able to offer their advice and share their experiences, but if you would like to talk to a professional about your situation, I would recommend contacting our helpline.

The helpline is a free, confidential service and they can put you in contact with your Local Parkinson’s Adviser who will have local knowledge of the area and may be able to help you access caring support for your wife. There are also Parkinson’s nurses who work on the helpline and would be able to offer information and support about your concerns towards your wife’s possible symptoms of dementia. The helpline is open 9am-7pm Monday to Friday, so please feel free to give them a call on 0808 800 0303.

Take care and please always feel free to get in touch if you need support.

Best wishes,

Emily - Forum moderation team

Hi Tot, thanks for your reply. Actually I did not know that I could be assessed as a carer without my wife being assessed first, so that was a very helpful suggestion! I will find out more and follow that up.

…and to EmilyDell, also thanks to you for your constructive response.

Hello again, following on from my earlier reply and again in case you don’t know there is a support available carers uk which is probably in amongst the info given by Emily. Have a look one of the sections is on the Carers Assessment, it’s an easy read ie plain English!

Hello again
I said I would give your post some thought and I have but as you are only too well aware you have a difficult and ncomplex situation about which there are no easy answers; to that extent, there is little I can say that will help or make much difference. However don’t underestimate what you have done so far to help both you and your wife. First of all you recognise you need help and you recognise that your own health is at risk. Fact is if carers don’t understand they need to care about themselves as much as the person they care for the risk of the home situation breaking down is increased; they may develop health problems themselves or frustration, resentment etc can increase and either can have serious implications all round. That you recognise and acknowledge that is a big deal. You have also taken the first step in coming to the forum, always the hardest. My feeling on reading your post is that whilst you recognise the complexity of your difficulties, not being able to see a way forward is potentially overwhelming. It is often useful with complex problems to stop considering it as one huge single difficulty, but a series of issues that together make up the whole. In your case, I think for you a carers assessment would be a good place to start because then other things can follow hopefully with support and concentrate on that as your first goal. There are two things you could consider doing which may help. The first is to write down all the problem areas in managing your wife’s needs and their impact on you. It doesn’t have to be anything grand bullet points will do, its purpose is solely to make sure you don’t miss anything out if you go ahead with the carers assessment. It is useful to note down any questions you may have too - it is not unusual for memory to fail at the crucial time. The other is to keep a diary or note of any ‘incidents.’ It is not uncommon for someone to ‘perform’ when with family, friends or indeed in assessment. A diary would paint a truer picture and could provide useful information such as patterns of behaviour or identifying trigger points.
I’m sorry I can’t offer some magic answers for you but hope you feel a bit more positive since approaching the forum - which is there 24/7 if you need it. Do let us know how you are getting on. Do take care and look after yourself.

Hi, I have only just seen your post and can relate, as my husband has had PD for 12 years and was diagnosed with dementia 4 years ago. At first it was just things he couldn’t do and memory issues. Over the last 6 months it has become much worse, every trauma ie falls, makes the cognitive symptoms worse. He also manages to ‘perform’ for medical professionals and when he behaves strangely (hiding things, trying eat an orange with the skin on!) it is my fault, I have upset him! Certainly keeping him and every situation calm and controlled (anxiety is also a problem) helps to keep him as normal as possible. It is so hard though. You will need help eventually and if you can tell your wife you are worried, maybe she will agree to an assessment. Things can progress from there, they did for us. There are medications that can slow down dementia and without using the D word, could you suggest there is help, if she would agree to a cognitive assessment. Good luck to both of you, the fluctuating nature of PDD makes the emotional strain so much worse.

Hi @spero
It is a little while since you posted on here, so hopefully you will read this at some point. My heart goes out to you from a place that has a good idea of what you are going through since I am in a similar position with my husband.

I have no doubt that you are a perfectly competent person, able to rise to the challenge of what life throws at you, but when your partner develops Parkinson’s with possible dementia, that is in another league altogether. It involves both huge practical challenges, such as how to keep your OH safe, running and maintaining a home, with the huge emotional challenges presented by the changes that are taking place in the person who was once your equal partner and to whom you looked for support, comfort etc etc. Both physical and emotional aspects need to be addressed tho inevitably the practical ones often take precedence.

But rather than waxing lyrical, I will make some suggestions, based on my own experience, which I hope might help you.

  • Hugh Marriott’s book, “ The Selfish Pig’s Guide to caring”. I cannot recommend it highly enough. He looked after his wife who had Huntingdon’s disease, tells it how it is, has a wicked sense of humour, and offers invaluable advice about all aspects of being a carer.
  • Professionals seem to use the term “ cognitive impairment” , not entirely a euphemism, and my OH found that easier to accept when he was at the stage of having some agency about the whole issue. Might your wife be less fearful of the issue being presented as one in which the Parkinson’s is having an effect on her cognitive capacity/ brain/ mental state…and that medication is available that can help ( not cure or reverse). It doesn’t have to be spelled out in words of one syllable for help of whatever sort to be provided, for you as well as your wife. I absolutely recognise that changing state from one day to the next, one hour to the next sometimes. Very hard to deal with…nothing predictable that one can organise around.
  • If not already taking something, might your wife talk to her GP about medication for anxiety/ depression? Other things can help, like listening to relaxation music/ nature sounds ( YouTube has it all), deep, slow breathing etc. You are probably familiar with all that already.
  • GP could also refer to the Community Neuro Rehabilitation Team and the Community Mental Health Team…though what if anything they will do during lockdown except telephone you I don’t know. And they have waiting lists…
  • You can get an independent living assessment by an Occupational Therapist via Social Services ( Adult Care). They will advise on aids to help dressing, mobility, beds etc and even provide some items for free ( toilet seat raisers, walking frames etc) . My OH uses a riser recliner bed and chair, both of which have been invaluable but you can be seriously ripped off by companies who prey on folk like us. The same stuff is available much cheaper from places like CareCo.
  • The Telecare service ( local authority again) provide “ Med Page” alarms of all sorts, ( if person falls out of bed for example) pagers etc which can be really helpful, and are free in our area but may not be everywhere. Available to purchase online.
  • The issue of her children…you don’t say why she wouldn’t want them to know. If they are in contact, I can imagine the huge step that is needed on your wife’s part to let them know what is happening to her, entailing as it does such a change of identity, perspective and in the balance of relationships (as well as dealing with their reactions). I don’t underestimate how hard it would be as a mother to admit to them (and herself) what is happening. We might want to keep things as normal as possible for our sons/ daughters, whatever age they are, to “protect” them, to not “worry” or “burden” them, and let them “get on with their own lives “, but I have come to think that it is what it is and there is little to be gained from hiding or denying that and much to be gained from sharing it. And it is a part of their lives too, which arguably they have a right to know about…but that is straying into much more controversial territory. Aside from your wife’s feelings about them, you may well need their support and that is also a factor to be taken into consideration. If however they are not in contact it is a very different matter.
  • Dementia UK has a forum not dissimilar to this one, called Talking Point which you might find helpful. Also a helpline.
  • Admiral Nurses exist to support carers of people with dementia…they sound wonderful but are not necessarily available to everyone ( our “local” service covers a vast geographical area and population , is run by the British Legion and so only available to ex Forces folk)
  • Help at home…not an easy issue to resolve…and it is important to get a good “ fit” , both for your wife and for you. It is your home that they are coming into after all. Private agencies abound but cost a fortune. Maybe your local Parkinson’s advisor or support group will know of someone who can help. A friend put us in touch with the person who had looked after her mother in law. Bingo! Pure luck really but happened because I had mentioned that I was looking for someone. Some other friends used the excuse of needing a dog sitter (which they did) to have someone (an experienced carer) keep an eye on their elderly relative who had dementia while they were away…a kind of deception you might argue but it was kind and gentle, dignity and pride were maintained and they got on like a house on fire. Problem solved.
  • So much to get your head and heart around Spero. There are lots of us out here, but that is not a lot of help when one is feeling under so much pressure and isolated in all ways, but please keep in touch via the form and we will all make our way along this path together