Struggling


#41

Hello Ann 1, it is not at all selfish and I doubt if anyone here on the forum be it the person with PD, family, friend or carer, would say you are being selfish. You say your husband is newly diagnosed. That can be a confusing, difficult and yes even frightening time for everyone. and you will no doubt go through every possible emotion there is. Truth is there is no right or wrong response and whatever you are feeling is legitimate. In a way you are not wrong, because it is life changing for everyone but, and you will have to just trust me on this at the moment, your life is not over. It will be different to what you envisaged I am sure. With a bit of time to get to grips with all that has happened you will find, as we all do, that it is possible to have a life with quality and meaning whatever your circumstances. I won’t insult your intelligence by saying it is easy and you and your husband will face many challenges. You will also find you can still laugh, still have a life together and anyway, it won’t all change overnight. This early period is difficult, take it one day at a time, get the information you need for now, keep talking with your husband and acknowledge your feelings as honestly as you can. You have contacted the forum, I hope you find the replies reassuring, we may not be physically with you but you are not on your own. Come back whenever you want or need.
On a practical level Parkinson’s UK publish a lot of information and it may help to read some of those, this may be a good place to start.
https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons
Take care


#42

thank you for your support my husband has Dementia also not sure if just vascular or lewy bodies still waiting for results i feel that for sometime now i have been like a mother not a wife and now i am going to be his carer i will get through this i have no choice i am just not ready for it


#43

Hello again, I can understand that this is a very difficult time for you and there are no easy answers. Right now I expect you are feeling a whole raft of emotions incl worry, anger maybe you feel cheated because this wasn’t what you signed up to when you married and your husband now is not the man you married. I just wanted to give you food for thought. Many people feel as you do, that you have no choice but actually you do. There is often an unspoken assumption that a family member will take on the role of carer and most do willingly but there is no law that says a wife or husband has to take on that role. Not everyone is cut out to be a carer but it is not easy to admit that to yourself or others. Point is you don’t have to and just knowing that can change how you feel about whatever situation you find yourself in. There is a huge difference between I have to be his carer and I choose to be his. carer. What is happening to your husband is not in isolation, it affects everyone but it does not of itself deprive you of the right to a life of your own unless you let it or choose to. For what it’s worth it sounds to me like you still have a way to go before you will be able to see the wood for the trees. It may help to clarify your thinking if you keep a piece of paper handy and just note down any words or phrases that occur to you. Don’t analyse it just note them down then when you are ready and feeling calm have a look at what you have written. You may find patterns emerging that will point you in the right direction. I know that sounds odd but it really can help. As I said there are no easy answers but you do have a voice and a choice. How or if you use them is up to you.


#44

thank you for understanding this may come as a shock but i have worked for 40 yrs in social care i have managed residential homes and have had EMI units and this had made my situation worse too much knowledge can be a bad thing .I can feel my self slowly working through my thoughts and feelings what really bothers me the most more than anything is the time no one can tell you how long .


Struggling
#45

I understand exactly the double edged sword of having knowledge/experience and. finding yourself in the situation of it - I have a chequered. work history but ended up spending nearly 18 years in social care and now have PD. The problem with the forum is you’ve only got what people write so I. find I do a lot of trying to read between the lines and hoping I am not too far off the mark. I hope that is true for you and given what you have just written, I think you will be ok… Have to say though you are right about timescales. So many take on the carer role in the early stages when life is still ok, they have no perception of the cumulative. effect over time. I know that doesn’t help you but I am inclined to think since you are aware you will take this into account as you need. Happy to chat again if you need. Take care.


#46

well you are realistic seen it all was a registered manager for 20 yrs plus so know about families responsibilities financial and what is to come but the scale of the responsibility the decisions the expectation from families is overwhelming everyone just presumes your going to be good sorry for offloading


#47

No need to apologise for offloading, we all need a release mechanism. Folk were often shocked when I said. I couldn’t take on the caring role full time and it was precisely because I have seen first hand how relentlessly demanding it is - they assumed I would be a natural. In fact I have taken steps to minimise as much as I can, my family being put in that position regarding my own care. Appreciating both sides doesn’t make the decisions any easier.


#48

Hello ann1, just wondered how you are. Hope things have settled a bit.


#49

Hi ann1,
Just to add my pennyworth…re .the issue about having one’s own life, alongside whatever caring responsibility one might have shouldered.

It doesn’t come easily…it sounds too “selfish”, but only in the context of having a partner who cannot make those kind of choices. I wouldn’t Have thought it selfish to do my own thing when my OH was in good health, but now that he is not, it does seem selfish to do something just for me, and to put my needs at least alongside his if not in front of his at times.
But the way I see it, he has Parkinson’s, I don’t. Yes, I am willing to do what I can to ease his burden and to help him live something approximating a normal life, but there is a limit to that, though in the immediacy of the moment and the urgency of his need, that is easily forgotten, which is where my resentment and anger begins to build. People talk about marriage vows or their non married equivalents…I think that is an emotionally manipulative trap . If I look after my husband, it is because I choose to and want to now, not because I made vows donkeys years ago , the potential consequences of which I had no idea about at the time ( and probably wouldn’t have made if I knew what they might entail…not that I would do any different now, I’m just saying)
There is no more training as to how to be someone with PD as there is for how to care for someone with PD, though plenty of advice and info for the latter . We all muddle through as best we can, with the help of friends if we are lucky, this forum, various professionals ( again if we are lucky on that score).
It is, for sure ( IMO) so much easier to be a paid carer, and have a home and healthy partner to return to after a long and hard day’s work, with whom to share the trials and tribulations of the day . But if there is no escape at home…?
Forgive me for wittering on…

Warm regards,
Pippa


#50

Hi Pippa
Thanks for the reply and yes i am settling down a bit just relishing that fighting it uses to much energy and wears you out i have plans made for girls holiday later in the yr and just take every opportunity to go out while OH can still cope at home for short periods at a time ,did have to come home from work one morning as concerned about leaving him he was very confused but came out of it and all bk to baseline at the min .This has made me aware that things could change at anytime but i will deal with it if and when ,just accept and make the most of the here and now Thanks


#51

started to come to terms with things but he has had a UTI and a delirium what a hard wk it has only made me realise how hard yhis is going to be and also how little support is actually out there Family tried but everyone has busy lives and they all just think you should pack your job in and devote all your time to care xx