Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Huntington's Disease: Dealing with parent who is ill while being parent to young children at same time

25 replies

tangent · 05/01/2008 14:23

Anyone in a similar position?

OP posts:
Original poster
tangent · 05/01/2008 15:20

Nope, Just me then.

OP posts:
Tamum · 05/01/2008 15:22

Tangent, there was a thread about HD the other day and although quite a lot of people posted I don't think there was anyone in your position. At the risk of stating the obvious I guess you'd have a much better chance of finding someone on one of the HD support websites. It must be very hard.

Original poster
tangent · 05/01/2008 15:29

Problem with those sites is that they seem to focus a lot more on the patient or person who is ill. Kind of wanted to discuss how you prioritise your own family when parent being emotionally abusive/manipulative etc. I guess not entirely a Huntington's specific problem, but wanted to see if anyone was out there today. Only other people i know in exactly the same position are my siblings, but you don't get an unbiased discussion from your own family.
I'll 'bump' this thread once in a while, see if anyone can help.
Thanks

OP posts:
Tamum · 05/01/2008 15:37

Oh yes, good point, it's not just specific to HD, is it, and I can see that the patient websites might not be so good at this angle. I'll bump it too

Millarkie · 05/01/2008 15:43

Bumping for you, and also to suggest that you might try a thread in the 'carers' section of mumsnet?

ArcticRoll · 05/01/2008 16:05

Bump.
It must be very difficult for you.

Original poster
tangent · 05/01/2008 18:52

Not sure I would consider myself a carer. She lives hundreds of miles away. Right now, I'm furious with her for being such an idiot. Not sure how much is disease relation and how much is just her. Feel more like a 'don't carer' right now.

OP posts:
fizzbuzz · 05/01/2008 19:23

Not quite the same, but I used to deal with my elderly mother when ds was quite young (6 or so)If that is any help?

It was very hard. Also know about Huntingdons as it is in my adoptive family

fizzbuzz · 05/01/2008 19:57

Frequently felt that issue about priority. My adoptive sister had undiagnosed HD for years, and it was hell. EVERYTHING revolved around her, BUT that is a symptom of the disease. (We didn't know this until later)

And at that time she lived 180 miles away..BUT I reached the point where I had to prioritise my family first, but I know how desperate you feel

fizzbuzz · 05/01/2008 20:30

God, just thinking about it........
You have all my sympathy

Original poster
tangent · 05/01/2008 21:04

Worst thing is she hasn't figured out she's got it yet. Her mother had it so it's always been a possibility. She's now clumsy, her driving is terrible but more obvious is her temper tantrums and utterly childish behaviour and soooooo in denial. Really difficult to accept the behaviour from your own mother. I'm not sure i understand how the disease makes them so selfish? My cousin, who's been through the same with his mother told me to just not take it personally, ignore it, say yes dear and get on with things, but i'm not sure i can. When she's rude I want to tell her to bloody stop it. It hurts when your own mother doesn't seem to care for anyone else yet expects everyone to care for her. It all stresses me out, not to mention that I may also have it, or my children. But I've been really short with DS who is 3 today and I'm sure it's because i'm annoyed with mother not him. Not sure i'm strong enough to cope with being mother to two young children and deal with mum. Want to just cut her out of my life for a while.

OP posts:
fizzbuzz · 05/01/2008 21:14

I didn't know selfishness was typical until ds went in to a specialist home. The home told us that it is a classic symptom, eg in your last post you put "when your own mother doesn't seem to care for anyone else yet expects everyone to care for her." Expecting the world to revolve around them is one I recognise sooo soo much. Nothing or no one else matters.

It is easy to say ignore it, but not always possible IME, they will carry on until you are forced to do something EVERY TIME. My sister was sectioned about 5 or 6 times before we knew what was wrong with her. On one of those tmes she managed to "escape"

I had to cut my sister out for some time. I wasn't proud of it, but it was the only way I could survive without going under. It was literally a survival strategy. It is much better now she is in a home. Unfortunately you cannot force your mum to have treatment, unless you have her sectioned. Treatment would improve the temper tantrums and stuff though ( the personality issus can be helped by treatment IYKWIM)

I'm really sorry you are going through this BUT your children are your priority. It doesn't mean you don't love or care for your Mum, but Huntingdons is beyond the care or relatives when the illness kicks in.

Sorry if i have said anything to upset you. It is a dreadful thing, and the personality changes of the sufferer are the hardest thing to bear

fizzbuzz · 05/01/2008 21:15

care of relatives....sorry

xxxx

Original poster
tangent · 05/01/2008 21:23

You haven't upset me, i can tell you understand the disease and the situation it puts everybody around them in. She came to help me 2 weeks after DS2 was born, she got upset about trivial stuff and for the first time ever I absolutely put my foot down. DH took her to a hotel for the night and picked her up in the morning with new tickets for a flight home that day. Absolutely had to draw the line on that one. 2 weeks post c-section with toddler behaviour to deal with also. Pure survival. Thankfully HV very helpful as was determined not to let mother trigger PND. Since then the relationship has purely been phonecalls where it's fairly easy to just chat for a bit then say, oh better go, DS needs something. I just find it really hard to not confront her when she's being a shit. We were supposed to go and visit in february, will cost a fortune as i don't want to stay with her, we are really skint after christmas and i'm not sure i want to spend money we don't have just so we can visit her and fall out. But i haven't visited for a year or so, and feel i should.

OP posts:
fizzbuzz · 05/01/2008 21:44

But, wouldn't visiting make it even harder? Obviously I understand you want to see her, but to stay full time with someone with HD AND 2 small children sounds like a recipe for disaster. I feel it would be really difficult for you......

I couldn't stay in the same room as my sister for longer than 1/2 hour. The tension and friction she created were impossible to deal with, and young children pick up on any situations and play up accordingly.

Is there anyone with your mum to help out a bit, or is she on her own? I think being in denial is pretty normal, but she would really benefit from medication

fizzbuzz · 05/01/2008 21:48

Email me if you want at catms at yahoo dot co dot uk.

The emotional pressure HD puts on family members is enough to drive anyone to despair. I remember feeling trapped all the time.
I hope I can help you a little bit

Original poster
tangent · 05/01/2008 22:00

I didn't plan to stay with her. Had found an apartment to rent for a week near her so could pop in, spent as much time as bearable, visit my brother and spend rest of time doing fun holiday type stuff. DH was going to come purely to support me, it's not his ideal way to spend time off work! She had been really ok on the phone recently so it seemed like a good idea, glad I didn't book it as latest stupidness has put me off. Thing is, she almost needs these 'maintenance' visits to keep her from losing it with me, visiting for her benefit not mine. She lives with her partner who knows about huntingtons and he knows she has it too, although hasn't discussed it with her as far as I know. He's fairly uncommunicative and stoic, and sometimes I think he believes my mother when she's having a pop at me. He told me he will be there for her 'if she wants him to' but I think she'll alienate him at some point and end up alone. Long term, I could never move near her as it's too far from civilisation for my liking. So the future seems bleak. Thing is, we're still in the early stages of the disease and I know it will get worse. Think my kids need me more right now than she does, maybe in a while when she really needs help then my kids will be old enough to understand. Depends on how long things take IYKWIM.

OP posts:
Original poster
tangent · 05/01/2008 22:05

Think I'm struggling with the feeling of cancelling the trip because she's being an arse. Don't want to feel like i'm punishing her if she can't help how she's behaving. But we can't afford it and it uses up valuable holiday time. We could use the money to go somewhere really great with the kids. Guilt.

OP posts:
fizzbuzz · 05/01/2008 22:13

But if she got treatment her behaviour would improve.

What do the rest of the family do? Do they go and visit her?

I think if you treat it as a holiday, and spend as much time as you can bear with her then it may be OK (the question is though, how long can you bear ). But I would keep away if her behaviour upsets your children too much. I don't know what to say about the guilt and cost of holiday. Could you go when money wasn't quite as difficult, or is it your mum you don't want to see?

How long has she had it, and how old is she?

Original poster
tangent · 05/01/2008 22:25

I have 3 other siblings all of which haven't spoken to her for the last 10 years unless absolutely forced upon them. Recently they have been more tolerant and accept her phonecalls or let her visit them but this is only since we've noticed her symptoms and that she is ill. Think they are doing it more to be supportive to me as it's just too much for one person to cope with but also it's easier to put up with the behaviour if it's the illness. As brothers and sisters we've only recently discussed it all openly once it became obvious that she has it, so it's been very supportive really. I don't want to bother them with this upset as it's about sis giving birth and her not finding out until next day. (my fault apparently).
They have all had very little to do with her though (shame though, because she was alright during that time). But they seem to be able to cut her out and let her in when it suits and they don't appear to feel guilty for it either.
BTW she's in her 50s. Not sure when symptoms started, very gradual, maybe 3 years ago.

OP posts:
Original poster
tangent · 06/01/2008 10:02

My aunt's and uncles are of absolutely no use. there are nine of them in total with at least 6 of them showing signs of huntingtons or have tested positive. Can you imagine? They had a family reunion once. We didn't even get there before we got a call to say don't bother they've all beaten each other up and trashed the house. Farsical.Sounds like your sister was lucky to have an adoptive HD-Free family around for her.

OP posts:
Anna8888 · 06/01/2008 10:30

Very, very for you Tangent. A former boyfriend of mine lost his father to Huntingdon's and it was a huge strain on all the family. And the husband of a very good friend of my aunt's also has Huntingdon's (fortunately he has no children).

I am not qualified to advise. You have my every sympathy.

fizzbuzz · 06/01/2008 13:36

Sounds farsical but typical to me. I'm adopted, my sister is my adopted sister, but it is in my adopted family, so I am not a carrier of it.

I am really sorry for you, it is an impossible burden for one person ie you. Can you not persuade her to confront it and get treatment, this would be such a huge huge help to you all.

Would she be upset if you didn't go? (Hunringdon's overreaction aside..)

[hugsFeel free to keep posting as long as you want

Original poster
tangent · 08/01/2008 18:03

bump

OP posts:
platesmasher · 26/01/2008 23:00

Fizzbuzz? Are you around? I've namechanged from tangent.

New posts on this thread. Refresh page