Hello
My partner was diagnosed with huntington’s disease a few years ago. Earlier this year I gave up working to be her full time carer.
I am having much difficulty accepting what is happening, suffering with depression and anxiety.
I am getting some support but I am impatient and it’s so hard dealing with isolation and lack of motivation.
I know the sort of things that would help but am currently at a loss as to how to put them in place. I/we have no friends in our local area.
Thanks for listening. I am new to this type of forum and do feel really scared
Hi Jim,
There’s nothing to be scared about, we don’t bite! We are all carers, here to support each other and share experiences.
Has your partner had a Needs Assessment from Social Services, and you, a Carers Assessment?
Are you claiming all the benefits you are entitled to, PIP, both care and mobility?
Do you get time to go out on your own at all, this is so important. If your partner has a Lifeline pendant alarm from the council, she will be able to summon help when you are out, a huge help.
Is the house adapted to meet her needs? If not, ask Social Services to arrange an Occupational Therapy Assessment.
I’m not in the least surprised you have depression - it is a fearful diagnosis indeed. Were you aware she came from a Huntingdon’s family? If so, then at least you have known of the ‘possibility’ from the off (and it is a FEARSOME disease because the genetic odds are that you DO have it, not that you DON’T…)
(Speaking of which, do you/she have children??)
I do hope you are in touch with the various support groups for Huntingdon’s families, and for their partners??? You will get far more ‘targetted’ response there, ie, everyone will know what you and your partner are going through.
I would say that, even for a fearsome condition like Huntingdon’s, don’t ever ‘give up hope’. Not only for better management and ‘delay of onset/increasing severity’ of the dreadful symptoms, but even, eventually, of actual ‘cure’ (ie, genetic intervention), such as is starting to become feasible for other genetic diseases like cystic fibrosis etc.
I don’t say that lightly, and I say it from the point of view of someone who also had to cling on to that possibility of ‘better treatments coming soon’ for my husband with terminal cancer (but for him they didn’t come in time).
Speaking of that, I think that you may also be afflicted by what can be called ‘premature grieving’…this is grief for someone that you know, sadly, you will not ‘grow old’ with, and it is a kind of preparation for the ‘actual grief’ you will feel on physical bereavement. It can be felt, too, by those whose partners are developing dementia - we know we are ‘losing them already’ and so we are starting to make our ‘long goodbyes’.
It is all so desperately sad, but one thing, and this is a ‘Job’s comforter’ statement, I know, if I said to you - IF you were given the horrendous choice of ‘my partner with Huntingdon’s OR ‘losing them in a car crash next year’…’ that MIGHT just help to cope with your own ‘long goodbye’???
I guess that boils down to that NONE of us know the ‘day nor the hour’ and that we must ALWYS make the very, very most of what we still have, and appreciate all that we HAVE had. I now look back on the happy holidays I had with my husband, and am SO glad we had them! We have to ‘seize the day’ while we still have it…
Wishing you all that is possible in a heartbreaking situation …
Hi Jim
Welcome to the forum. Please ask whatever questions you want, and you will probably be bombarded with advice.
But do too have a good read round all the other threads too as you see just how many other people are in a similar situation, and how many do come to adapt to it.
We have ‘non caring’ threads too for general chit chat and outside interests, everything from photos of birds and garden sheds. Feel free to introduce any topic. Forums such as this are one of the benefits of technology for isolated carers
We also have a good summary of a whole hosts of things to help lift mood when one is a bit down . It’s here for your easy reference https://www.carersuk.org/forum/support-and-advice/carers-health-issues/positive-ways-to-cope-with-low-mood-12505
Kr
MrsA
Thank you for your replies.
We are working on pulling all the strands together. OT have been really good including others.
Just so much to do…