Am i being selfish?

[cheeki119]

My father, for around 25 years now, has had leukaemia. Its one of the rarer forms of leukaemia and my mother is his main carer. My brother has mild autism and my mother and father recently moved to stafford to support him through university. On a recent brain scan they found signs of dementia in my father. My mother is finding it increasingly difficult to cope under the pressure and I am seriously thinking of moving closer to her to support her but my partner isnt so shore. We both have good jobs here, friends and his family. He seems reluctant to look into the idea but i dont want to leave all this on my mother. Am i being selfish asking him to give up everything?

[dorothy-thompson]

Dear Cheeki119

This is the perennial question, who cares for the carers?

I hope you resolve your dilemma.

Kindest regards

Dorothy thompson

[SharonAB]

Dear Cheeki119,

What I thought the right thing to do 10 years ago would be answered one way, If it was asked five years ago it would have be answered another and if asked again tomorrow my answer would be different again! I know what I missed out on with the care of my sister and husband was the extra support - the real breaks away from the situation to restore energy, and someone I could rely upon to put some definite time aside each month to be part of the numerous medical appointments and phone calls . Perhaps worth considering?

Regards, Alana - Western Australia

[SharonAB in reply to SharonAB]

NB I am curious - Cheeki119 - What made you place your post on a Progressive Supranuclear Palsy Forum?

[ashav]

What about moving them closer to where you are?

[Kevin_1]

Hi cheeki

Being practical and as someone who works for the NHS in the UK.

I am assuming you are in the UK.

First off - carers care is an emerging major push by the Dept of Health. They now talk of triangles of care. The patient, the carer and the NHS. Get your mother to talk to your fathers GP about carers support.

For yourself - there is no 'selfish'. Each person has different coping levels, commitment levels and prior calls on their life. etc

You may want to take a couple of sheets of paper mark one "Moving closer and getting more involved" and the other "Make no change just yet". Draw a line down the middle of each page and mark the left hand side 'pros' and the right hand side 'Cons'. Fill both out with he pros and cons. Don't think too much just get them all down including the silly ones. Often your sense of what is right and necessary for you will emerge when you look back over them.

Remember you do not have to make a decision until you need to... sometimes a delayed change allows for better change as you see the picture more developed.

Hope this helps

Good luck

Kevin

[Sharon637]

I'm with Alana here in the sense that the question asked of me and my husband four years ago was answered with a positive. With hindsight, my answer would have been different. We gave up our careers, sold our home, ditched 90% of our possessions and left our country to move to Spain to care for my parents. Mum had cancer and was too ill to keep an eye on Dad, who was getting worse with what we thought was vascular dementia and Parkinson's Disease. We knew it would leave us in a disastrous situation one day and now that day has come. But that's not the reason I would now have said no. My reason is that being in the UK could have been far better for both my parents. Here in Spain, we had no help whatsoever. There is no continuing care, no home care, no palliative care and although you can get a doctor to do a home visit, it is extremely hard to do so and you have to go and collect them then take them back. A specialist would never do a home visit, only a GP. There is no real social services to speak of either and nursing or care homes are private and incredibly expensive. So I would have said no. I would still have given up my job to care for them full time but might have broached the subject of combining our assets to buy a house big enough for all of us, and suitable for disabilities, which our house was certainly not. Kevin's idea of pro's and cons is also a good one, as were his words about the definition of selfish. Being a carer is very hard, very few are cut out for it and very few would ever wish it for themselves as much as they wouldn't wish the illness on the loved one. Try to think of the long term consequences when you do those pro's and cons. Is your partner going to resent you and leave you or will he adapt? Will you be left with no job and no prospects when the caring is over? Would you both still need to work, making the time you can give them minimal anyway? Lots of questions to ask and there are limits to what individuals are willing to give up and you have to honestly admit to these and not feel selfish if you find the answers are just too much. You also have to weight up who needs more care? Would your brother be ok if you moved your parents closer to you or even in with you both? Who would benefit most from each situation and who would suffer the most? I am sure if you sit down and brainstorm, you will work out the best practical way forward that benefits everyone the most, giving the support to those who need it most and leaves everyone, and I mean everyone, with a quality of life they are comfortable with. I wish you luck in finding your answer!

[jimandsharynp]

My advice is to monitor your mother closely for signs of fatigue and depression. As long as she is coping and in good health I'd not move. However, if she begins to show signs of struggle either in phone or visits then you will need to act. You only have one mother in this world and she is an important part of your life. I understand you are torn between two people you love but eventually you will need to make a decision. I would hope that your partner would be understanding of the position you are in and support you in whatever you decide to do. Jimbo

[dorothy-thompson]

Dear Kevin

In am intrigue, what can you mean by the NHS sudden interest in carers and the "triangles of care" ? My experience of the NHS since my husband's diagnosis in 2010 is exactly the same now as if was then, they can do nothing for him.

Are you perhaps referring to Carers UK, if so someone from that organisation rings me occasionally to ask how I am coping.

Regards

Dorothy Thompson