HD Dad, house move

[PlymouthE]

Hi all,

I've not joined before but I feel now that I could do with the help and support of a community who are familiar with the symptoms of HD. My dad was diagnosed maybe a year ago or so but we knew he had it before that, as both his mum and his brother had it and he was symptomatic for a long time. I found out in a particularly nasty way, from my mum who was confessing her affair to me at the time and using it as an excuse. I was asked to keep this affair secret from my dad for a year, unless it 'made me more ill' (I have a history of depression and anxiety). This all came out in the wash in the last two years and now they are separated, I have moved with my dad in order to help him set up his new house and because I'm not well enough to live on my own. I didn't want to live with my mum because we don't get on, she is quite toxic.

We moved about three weeks ago and are still sorting the house out but I'm finding it difficult to get on with my dad sometimes. I feel guilty because he's not really advanced- he is medically retired but he can care for himself. I would not consider myself a carer, though I help sometimes with things when I think he's having trouble. But we have arguments where anything I say will kick him off, he's on citalopram but hasn't had it in a week. I know that my anti-depressants need a raise because I'm irritable and I'm finding it difficult to get up in the mornings. I was quite happy working 5 days a week before and need to get back into that. I'm helping with putting pictures up today and we were doing that for about an hour and a half, he objected to me then spending 10 minutes reading my book and when he went out to get some picture fittings, we then had an argument because I said I wasn't going to clean the bathroom while he was out.

I am happy to help, but he doesn't seem to recognise that I have my own stuff to be getting on with during the day and not all spare time is to be directed by him. I want to live with him and to help but I want my own time during the day too, both breaks and time for applying for jobs/internships etc.
Am I being overdramatic?

[Spanishgraeme]

Originally Posted by PlymouthE

Hi all,

I've not joined before but I feel now that I could do with the help and support of a community who are familiar with the symptoms of HD. My dad was diagnosed maybe a year ago or so but we knew he had it before that, as both his mum and his brother had it and he was symptomatic for a long time. I found out in a particularly nasty way, from my mum who was confessing her affair to me at the time and using it as an excuse. I was asked to keep this affair secret from my dad for a year, unless it 'made me more ill' (I have a history of depression and anxiety). This all came out in the wash in the last two years and now they are separated, I have moved with my dad in order to help him set up his new house and because I'm not well enough to live on my own. I didn't want to live with my mum because we don't get on, she is quite toxic.

We moved about three weeks ago and are still sorting the house out but I'm finding it difficult to get on with my dad sometimes. I feel guilty because he's not really advanced- he is medically retired but he can care for himself. I would not consider myself a carer, though I help sometimes with things when I think he's having trouble. But we have arguments where anything I say will kick him off, he's on citalopram but hasn't had it in a week. I know that my anti-depressants need a raise because I'm irritable and I'm finding it difficult to get up in the mornings. I was quite happy working 5 days a week before and need to get back into that. I'm helping with putting pictures up today and we were doing that for about an hour and a half, he objected to me then spending 10 minutes reading my book and when he went out to get some picture fittings, we then had an argument because I said I wasn't going to clean the bathroom while he was out.

I am happy to help, but he doesn't seem to recognise that I have my own stuff to be getting on with during the day and not all spare time is to be directed by him. I want to live with him and to help but I want my own time during the day too, both breaks and time for applying for jobs/internships etc.
Am I being overdramatic?

Hi
It's very difficult to say what's normal or unusual during a house move.
It's very stressful and can lead to many arguments all by itself.
What I can say is Citilopram has to be removed gradually.
My wife has just changed to an alternative. She was on 30mg per day. The doctor recommended that for the first week of the changeover she should take 10mg, 2nd week 10mg every second day and then 3rd week nothing.

I'm not sure what effect suddenly stopping will have but I doubt it will be positive.

Hope that is of some help.

Good luck

[LECS]

Absolutely not. You are being perfectly reasonable. Unfortunately we have unrealistic demands. As soon as my dad looked like he was about to sit down or stop for a few seconds my HD mum would be verbalising her disgust and I’m afraid that I am the same, although I am aware and I do try not to but I find the words are often out before I can stop them. My HD mum had no filter and led my dad a merry dance for years. He did everything that she said, always, it was heartbreaking to watch. It’s why I live alone.

Sorry I didn’t welcome you to the board, welcome, although I am sad that you need to be here. Unfortunately if you are not well yourself you will find it much harder to cope with your dad. I do respond better to clear language, you could try “I am not feeling up to cleaning the bathroom as well as putting up the pictures so I will do the bathroom tomorrow” Don’t read until he knows the task is finished. Tell him after the task is finished you want to read your book. It might be helpful to draw up a list each day of expectations on both sides, my unrealistic demands are normally borne out of anxiety, not knowing what’s coming next. I don’t like others making assumptions, I like things discussed and prefer to know. It is really difficult. I know it’s hard to believe but I now can’t wait when crossing the road, I find it difficult to wait to allow a car and I am itching to walk across the road, I have become unsafe and so now I am accompanied but I always begin tugging at their sleeve and start walking on the spot if kept too long. It’s an compulsion that you just have to, I’m afraid. I know I shouldn’t want to do it, that it is not safe but I can’t help myself. Think of some things that your dad might like doing when you are occupied. Encourage him to do as much as he can with all the things that he can do and you concentrate on the things that he is unable to do. I’m sorry that you feel your mum is toxic because you will need as much support as you can in order to cope with supporting a dad with HD. I could write lots of suggestions but I’m not sure at what stage your dad is so I will leave it there. Keep using the board and talk to your dad about how you feel and seek support. Best wishes Lily.

[Rainbows1034]

Hi,

I really feel for you. My dad has HD too and my mom did not see it as her responsibility to care for him. This did not make sense to me, because I did not chose to have him as a dad, instead she chose him as a husband. They divorced before my dad was officially diagnosed, so there was no one to take care of my dad besides me and my siblings. Do you have siblings? An aunt or uncle? Grandparents? Lean on these people all you can.

I would also recommend trying to take up as many hobbies as you can. Perhaps some hobbies that you can do at home, while you are looking after your dad. Start a blog or instagram page. Knit. Read. Do yoga. Practice meditation. Learn a new language. Answer posts on here!

You have to remind yourself everyday that, most likely, how your dad acts is just the HD talking.

Good luck to you. I admire your courage and compassion.

Originally Posted by PlymouthE

Hi all,

I've not joined before but I feel now that I could do with the help and support of a community who are familiar with the symptoms of HD. My dad was diagnosed maybe a year ago or so but we knew he had it before that, as both his mum and his brother had it and he was symptomatic for a long time. I found out in a particularly nasty way, from my mum who was confessing her affair to me at the time and using it as an excuse. I was asked to keep this affair secret from my dad for a year, unless it 'made me more ill' (I have a history of depression and anxiety). This all came out in the wash in the last two years and now they are separated, I have moved with my dad in order to help him set up his new house and because I'm not well enough to live on my own. I didn't want to live with my mum because we don't get on, she is quite toxic.

We moved about three weeks ago and are still sorting the house out but I'm finding it difficult to get on with my dad sometimes. I feel guilty because he's not really advanced- he is medically retired but he can care for himself. I would not consider myself a carer, though I help sometimes with things when I think he's having trouble. But we have arguments where anything I say will kick him off, he's on citalopram but hasn't had it in a week. I know that my anti-depressants need a raise because I'm irritable and I'm finding it difficult to get up in the mornings. I was quite happy working 5 days a week before and need to get back into that. I'm helping with putting pictures up today and we were doing that for about an hour and a half, he objected to me then spending 10 minutes reading my book and when he went out to get some picture fittings, we then had an argument because I said I wasn't going to clean the bathroom while he was out.

I am happy to help, but he doesn't seem to recognise that I have my own stuff to be getting on with during the day and not all spare time is to be directed by him. I want to live with him and to help but I want my own time during the day too, both breaks and time for applying for jobs/internships etc.
Am I being overdramatic?

[Gabby]

Originally Posted by PlymouthE

Hi all,

I've not joined before but I feel now that I could do with the help and support of a community who are familiar with the symptoms of HD. My dad was diagnosed maybe a year ago or so but we knew he had it before that, as both his mum and his brother had it and he was symptomatic for a long time. I found out in a particularly nasty way, from my mum who was confessing her affair to me at the time and using it as an excuse. I was asked to keep this affair secret from my dad for a year, unless it 'made me more ill' (I have a history of depression and anxiety). This all came out in the wash in the last two years and now they are separated, I have moved with my dad in order to help him set up his new house and because I'm not well enough to live on my own. I didn't want to live with my mum because we don't get on, she is quite toxic.



We moved about three weeks ago and are still sorting the house out but I'm finding it difficult to get on with my dad sometimes. I feel guilty because he's not really advanced- he is medically retired but he can care for himself. I would not consider myself a carer, though I help sometimes with things when I think he's having trouble. But we have arguments where anything I say will kick him off, he's on citalopram but hasn't had it in a week. I know that my anti-depressants need a raise because I'm irritable and I'm finding it difficult to get up in the mornings. I was quite happy working 5 days a week before and need to get back into that. I'm helping with putting pictures up today and we were doing that for about an hour and a half, he objected to me then spending 10 minutes reading my book and when he went out to get some picture fittings, we then had an argument because I said I wasn't going to clean the bathroom while he was out.

I am happy to help, but he doesn't seem to recognise that I have my own stuff to be getting on with during the day and not all spare time is to be directed by him. I want to live with him and to help but I want my own time during the day too, both breaks and time for applying for jobs/internships etc.
Am I being overdramatic?

Its a hard time moving very stressful and will effect both of you .. upping your medication may help and your dad certainly needs to take his or have a review and maybe change them .. why has he not taken them for a week ?
Once you get house sorted and into some kind of routine it may improve , could you have a discussion with him when you are both
calm about what you need to be able to do and what he can do . So you both
know where you stand .
If hes in early stages you should still be able to have a life I work full time my husband has been retired due to symptoms for about 3/4 years he still manages most things for himself like you I don't consider myself a carer .
The book Hurry up and wait by Jimmy Pollard is helpful in understanding some of the issues that can occur not being able to wait for what they want but also having to wait for them to get motivated or think about things that you need want .

Hope things settle a bit

Gabby

[PlymouthE]

Originally Posted by Spanishgraeme

Hi
It's very difficult to say what's normal or unusual during a house move.
It's very stressful and can lead to many arguments all by itself.
What I can say is Citilopram has to be removed gradually.
My wife has just changed to an alternative. She was on 30mg per day. The doctor recommended that for the first week of the changeover she should take 10mg, 2nd week 10mg every second day and then 3rd week nothing.

I'm not sure what effect suddenly stopping will have but I doubt it will be positive.

Hope that is of some help.

Good luck

I have just logged back in so many months later to find all these lovely responses!

Yes I agree, the arguments have let up a little as we have sorted more of the house out over the past few months. Although we have unwittingly moved into a flea infestation which is now testing my patience. The exterminator has been out twice now and I haven't seen any for a while but don't want to get my hopes up because it's heartbreaking when you realise that you have to go through the whole deep cleaning process all over again.

My dad is not very thorough with the vaccum cleaner either so when the exterminator comes, it's me running round like a headless chicken for about 6 hours before he comes and it's hard to be patient then when he wants to argue about something. For example, I was disinfecting the patio to make sure the little oiks weren't breeding out there and coming back in on the dog and I'd been scrubbing away for 2-3 hours, with my dad holding the hose when I started feeling faint. I asked to be passed my bottle of water but was told that he couldn't go in the house as would have to take his shoes off, so I continued sans water. Half an hour later I was very faint and asked if he would take over for a while, but after watching him ineffectively move dirty water around for ten minutes, I realised the onus was going to be on me. I tried to be as quick as possible as I got more and more lightheaded, and it came to the time we were supposed to be heading to my aunts for tea. I had maybe ten minutes more work to do, but my dad could not wait for this and was aggressively insisting that I start again tomorrow as we needed to leave. I said that my aunt would have no issue with me finishing a horrible job and being ten minutes late because then I wouldn't have to wake up and do it in the morning. We argued about this as I finished and then cleared up. I sat in the kitchen and had a glass of water and something small to eat before heading over because I was still so faint, it's a 15 min walk and neither of us drive (me anxiety, him HD). My dad proceeded to tell me I needed to get up and go that second because he didn't want to be late. I chose my battle then and said that if I didn't sit down for two minutes I would faint on the way there.

Anyway, apologies for the essay but sometimes the situations that you get into are so horrifying ridiculous it would be laughable if it wasn't so horrible. I know that it's the HD talking when he's like that but it can be so hard to be understanding.

He hadn't had his citalopram because he forgot to order it. After that week I bought a tablet organizer with weekdays on and I check when his meds are running low, so I can monitor when he has or hasn't taken them without nagging everyday. Trying to help while simultaneously appearing not to be doing too much seems to be the way to go.


What has your wife been moved to? I am on 150mg Sertraline.

[PlymouthE]

Originally Posted by LECS

Absolutely not. You are being perfectly reasonable. Unfortunately we have unrealistic demands. As soon as my dad looked like he was about to sit down or stop for a few seconds my HD mum would be verbalising her disgust and I’m afraid that I am the same, although I am aware and I do try not to but I find the words are often out before I can stop them. My HD mum had no filter and led my dad a merry dance for years. He did everything that she said, always, it was heartbreaking to watch. It’s why I live alone.

Sorry I didn’t welcome you to the board, welcome, although I am sad that you need to be here. Unfortunately if you are not well yourself you will find it much harder to cope with your dad. I do respond better to clear language, you could try “I am not feeling up to cleaning the bathroom as well as putting up the pictures so I will do the bathroom tomorrow” Don’t read until he knows the task is finished. Tell him after the task is finished you want to read your book. It might be helpful to draw up a list each day of expectations on both sides, my unrealistic demands are normally borne out of anxiety, not knowing what’s coming next. I don’t like others making assumptions, I like things discussed and prefer to know. It is really difficult. I know it’s hard to believe but I now can’t wait when crossing the road, I find it difficult to wait to allow a car and I am itching to walk across the road, I have become unsafe and so now I am accompanied but I always begin tugging at their sleeve and start walking on the spot if kept too long. It’s an compulsion that you just have to, I’m afraid. I know I shouldn’t want to do it, that it is not safe but I can’t help myself. Think of some things that your dad might like doing when you are occupied. Encourage him to do as much as he can with all the things that he can do and you concentrate on the things that he is unable to do. I’m sorry that you feel your mum is toxic because you will need as much support as you can in order to cope with supporting a dad with HD. I could write lots of suggestions but I’m not sure at what stage your dad is so I will leave it there. Keep using the board and talk to your dad about how you feel and seek support. Best wishes Lily.

I am sorry to hear about your diagnosis. It must be so hard to be self-aware and having knowledge of how your mum progressed, having some idea of the future. That must be really difficult to deal with. Do you ever feel lonely?
My own mum, who I described as toxic, she doesn’t seem to have the ability or the want to empathise with people and even as my dad is losing his driving license, is threatening to take him to court over some money that is his legally anyway. I recently had a couple of days away with her in Cornwall and quite enjoyed it, bar the normal bits where she gets a bit bossy and manipulative. She has a side to her that is really warm and maternal. But it doesn’t last, or there are other things going on behind the scenes. Such as my coming home to find that she is trying to take my dad to court when she already got the better half the of the separation agreement. It made me feel awful, having sat there and let her buy me an ice cream etc etc. I felt like a traitor to my dad. It’s difficult because though they’re splitting up, I’m not a child in this scenario and I understand the legal ins and outs of it and who is screwing over who. So I don’t know that I can keep on seeing her as long as she’s treating him like that, knowing that the stress this is bringing is making him irreparably worse and she does not seem to care. But I don’t know how she would take a separation from me. Though she doesn’t live with me now, and her phone calls are less toxic and more sweetness and light, if she wants to speak to me at a precise moment in time when I am actually busy, she’ll ring and ring and ring, sometimes as much as 7 times in a row. Because she’s free and it doesn’t matter if you aren’t. So I don’t know if telling her that I need complete space for a while would blow up in my face.
So with my depression I find it easier to break tasks up, say if I am having a difficult day, I’ll read for ten minutes, then do my task for ten minutes, and keep going until it’s done. Otherwise if I think about having to do all the dishes at once, or get fully washed then I get overwhelmed and do nothing. That’s generally how I manage to get through my less productive days. But obviously that’s completely at odds with the demands that my dad has or the way that he works.
Thank you for your welcome, it is nice to talk to so many compassionate people. Is your HD mum still alive? I do find it easier to use clear language and to steer clear of anything that may make him feel like a burden, which he absolutely is not but when my patience is thin I’m sure he reads into my words sometimes. We do have some basic expectations, that one of us will cook and the other will wash the dishes on alternate days. But that’s about it so maybe a list would be helpful. So you prefer to have a plan for the day? I’m sorry this is happening to you, it sounds so hard. Do you find it to be like a voice in your head or like a compulsion?
My dad joined the rambling association and is going to the HDA social events in our area, I may join him sometime to those but the rambling I thought would be a good thing for him to get out without me and meet people. I am finding it easier to cope when I just tell myself that I can’t expect him to be able to do certain things and it’ll be less stressful for everyone if I just get on with it myself.
My mum is a law unto herself. It sounds awful but the only way I can make sense of her as a whole person is as one with a personality disorder. She is very much Jekyll and Hyde and has always been like that. I am only just learning how to deal with it as an adult really and haven’t forgiven her for asking me to carry her secrets. However I am surrounded by a lot of caring family down here who are all being very supportive. And I would say my dad is at the mid stage really, he falls over quite a bit, he fell over at bowling yesterday and smashed his head on the rack where the balls come out. Uninjured but embarrassed as it was busy and though I was beside myself, the more I fuss, the more embarrassed he is. He cut his head on a door a couple of weeks and didn’t tell me, the wound looked really nasty and he wouldn’t let me put antiseptic on it at all. He gets angry when I make more fuss.
What stage would you say you were at? And how old did you say you were?

On a funnier note, my cousin (who has Downs Syndrome) had her birthday yesterday and a couple of her friends from her day centre came along. One of the boys took a liking to me and played dead for at least an hour, exclaiming loudly at me at frequent intervals that I needed to come over and give him the kiss of life. I made her a mermaid cake and she almost cried when it came out  but do love spoiling her. It’s probably the best way I can say thanks to my aunt and uncle for being there for my dad and me.
Have you had a good weekend?

Apologies for the essay.

Emma