Becoming my wife's carer

Hi, this is my first time on this, or any forum as I still class myself as a dinosaur in this hi tech age we now live in.
My wife was diagnosed with PD approx 11 months ago and I now find myself living indoors with her, as she panics whenever I leave the house. As you can imagine, this is causing problems with work. I am self employed and can do some work from home but I need to go out and meet customers. Our finances are getting stretched now because of this and I am thinking of having to give up work and become her carer etc but I don’t know which way I need to turn for financial help as I have never been unemployed for over 40 years.
My wife is now just past retirement age and I have another 3 years before I get there.
Any pointers will be much appreciated.

Hi Mr Mike,
We wanted to say hello and welcome you to our forum community. We are very sorry to hear things are so challenging for you and your wife at the moment. We can assure you that you are not alone in this, as you are sure to hear from our other community members soon. Happily we can offer you some assistance in the form of our free and confidential helpline, staffed with advisers who can help with finances and paperwork things, and that’s just the start. They can also assist with medication and with finding local support and in loads of other ways. Please do reach out to them at 0808 800 0303. We also have a website you can use as a tool to reliably inform, which stays up to date on research, news, and archived forum discussions.
We hope this will provide some small relief, and with our warmest wishes,
Jason
Forum Moderator

Hello Mr.Mike and welcome to the forum

Sorry to hear you’re having a hard time just now and it looks like you’ve got some important decisions to make.

As far as I can tell there were two sides to your dilemma. The first thing you need to know is what your situation is regarding your finances, your options regarding your business and so on. Jason has given some excellent advice which I hope you will follow up if nothing else it will give you a starting point.

The second part concerns your considering giving up work to become your wife’s carer. This is an entirely natural way of thinking and maybe it is the right thing to do. I wanted however, to take this opportunity to say that in my opinion you must think about this very carefully. I have written about this on the forum several times as even a cursory look at some of the posts will demonstrate how difficult being a carer is. Usually someone takes on the carer’s role in much the same way as you are doing now and in the early days it is not too bad, symptoms may still be relatively mild and yes X may need some assistance but you can still get out and about and your daily routines remain largely intact. What is rarely understood or considered at the start is that the caring role can be relentless and exhausting as the condition progresses and could include some challenging behaviours, dementia and so on. In the beginning you may still be able to talk and discuss things with your spouse. Later you could find all the decision making is yours alone. Furthermore Parkinson’s is not considered a life shortening condition and as your wife is only just of retirement age, it could be a role you carry for many years. You also need to consider yourself as a person, I believe not everyone is cut out to be a carer and it may not change your decision but you need to be aware. There is no law that says a family member must take on the caring role but there is a strong societal assumption that a family member will do so.

Whenever I respond to a post in this way I invariably get comments like I am ignoring the emotion and history that comes with the decision to become a carer, that I am not taking account of the loyalty etc of a long term relationship. They miss the point which is it may not be easy to achieve but they do have a choice about whether or not to continue with the caring role. This is the first time I have had an opportunity to say this to someone who is considering taking up the carer’s role rather than already doing it. I do not write in this way to make things more difficult for you nor ask you to change what you feel is right or what you want to do for your wife. I write only to make you aware of what you are considering taking on.

It will take a while I would imagine to sort things out but I wondered in the meantime whether your wife would be willing to stay with someone else in the house whilst you attend to your business. They are usually known as sitting services and your local adult care service by the local council may be able to help or signpost you or alternatively you can arrange it privately through an agency.

I also wondered if your wife might not benefit from an assessment by the local council as there may be options you hadn’t considered such as a day centre. I am aware you may think that impossible as she panics but if you don’t know what’s out there you can’t even try it. They may also come up with other solutions to help your wife and perhaps that may mean that you don’t have to give up work just now and buy you some time to plan your future together.

I hope some of what I’ve written has at the very least given you some things to think about in maybe a slightly different way. It is not an easy situation you find yourself in and I sincerely hope you are able to find a way through that suits you both.

With best wishes to you and your wife.
Tot

Hello Mr Mike
Firstly welcome and well done for posting.

Your wife is suffering from separation anxiety following her diagnosis and needs professional help. Her demands are not reasonable especially at this early stage and unless and until she can get help with coming to terms with her diagnosis both of your futures will prove challenging.

My husband suffered from separation anxiety following a prolonged stay in hospital and I found it really difficult to manage.

It is time to sit down and talk to her (if you can) and explain the impossible situation she is putting you in . You are still a person in your own right and she needs to respect that you still have your own life. Maybe she needs to understand that in order to hold on to someone you have to let them go.

At this early stage when your wife is obviously suffering I do not think it is right to speculate on your future caring role as it will only increase her anxiety and make you feel guilty. You both need good support and counselling. I would talk to your GP and contact your local Parkinson UK branch/local advisor /ring the helpline and try to find a way to move forward.

This is how it is at the moment, it does not necessarily mean that things cannot change.

Much love to you

Thanks for your reply and I’ve taken on board what you say. I think I was just unloading my concerns when I wrote and I think I do need to carry on working, not just for financial reasons but for my own head space as I’ve always worked and cannot see me enjoying not working. I know things to come may get harder to accommodate both working and caring but I will cross that bridge when I come to it. I am trying to get my wife to do things and get involved more with things like exercise classes and getting out more, so fingers crossed. Thanking you for your time to reply, it’s much appreciated.