Guilt ridden being the only child

[tmitch]

Hi there
I am new to this so not sure what to expect really but here goes!!. Have been reading all other posts and feel it is time for me now too.
I am 34, I have an only daughter of 14 and my husband works away in Merchant Navy.
We have just found out after 2 years that my young mum of 58 has FT lobe dementia, or that is what they think, she has been for an MRI scan last week and we should get the results to confirm this dreadful illness.
She still knows me can still do lots of things, but gets words mixed up every time she speaks, she is very muddled and it can sometimes be very frustrating. She is not able to drive and finds it hard to be motivated, also she wears the same clothes day in day out and doesnt realise it, it makes me very upset to see this, as she was such a capable lovely mum before.
I know I should go and visit more often, but feel that when I arrive she has nothing really much to say and never remembers that I have been. I always run out of things to say. I feel guilty daily about what I should be doing, but feel I cant do anything that will help. There are no brothers or sisters to take that guilt away even if just for a few hours.
I know I should be greatful that she can still do many things and this is just the start of a very long road, but I miss my mum, we used to be so close.
My dad is throwing himself into work as a coping mechanism and doesnt want to be there, she accuses him all the time of having an affair and he is finding it very hard to deal with, as it is all very new to us, even though she has been like this for sometime, they said it was depression for a while, but reading about Front Temp lobe dementia tells me thats what it is she has.
It would be great to hear from anyone, as I just feel so alone at this moment in time.
Thanks for listening


Natasha x

 

[stikwik]

a listening ear

hi there,

i wanted to respond as i have just joined in the last few days too and although our situations are a bit different, they are similar too. i am 33, have an only daughter age 14, but it is my husband (age 54) with the dementia. in a way maybe it's easier to accept, in that there's no 'visiting' involved, just trying to live side by side in harmony. i can see that visiting is harder because you're not in your home environment and have to find things to do or say. a bit like babysitting for 2 hours is harder than looking after your own child for a day.

i probably shouldn't give advice as you may only want someone to hear how you're feeling, but if i was to suggest anything, i'd try to accept that visits are hard, they're not the same as life was in your relationship before, and it's only for a short time each time. when i have to go somewhere outside my comfort zone i think 'it's not for long, after i can go home and relax' etc, just to get me through it. hardly the same in that it is much more distressing for you in the situation, but the essence is the same perhaps. it will of course be difficult, ongoing, to accept the new situation. but it is so.

i am the only family member my husband has to care for him. his other family members have deserted him (due to a previous fall out, and having told them about his illness, hasn't made them grow up and restore relations). so i know a bit of the loneliness you feel. don't feel guilty about your feelings, do what you can for your mum, that's all anyone can ask of you and she wouldn't want you to feel guilty i'm sure. you have to have your normal life too and by worrying/feeling guilty, you will end up burning yourself out which is bad for you and her.

 

[Grannie G]

Dear Natasha, welcome to Talking Point [TP]

Please don`t feel guilty, you have done nothing to be guilty about. You are naturally very worried about your mother and father, as she is ill, and he seems unable to face it. It isn`t surprising as it`s a dreadful condition to have to come to terms with.

You say you find it difficult visiting your mother as she has so little to contribute. She can`t help it, it isn`t her fault, but it doesn`t mean she isn`t happy to see you. My husband often says we never see our son, and he visits regularly. But when he does come, my husband is delighted and tells me what a wonderful son he is, just after he leaves, then 10 minutes later he has forgetten he`s been.

When our son comes, he talks to his father about his work, the children, football, even politics. He plays it by ear, depending on my husband`s mood. If it`s a bad day, he just sits and talks quietly to him, telling him he`s sorry he`s not well, etc.

Don`t give up on your mother Natasha. Both your parents are probably very frightened and worried. No one can expect you to take all the responsibility but they will be comforted to have your support.

Take care

Love xx

 

[tmitch]

thanks for replys

Hi there
thanxs guys for your replys

Of course I know its not mums fault that she is the way she is, I dont ever blame her, it must be awful for her to not know how to talk or have a conversation with me, I suppose I just wanted to hear from people in the same boat, and if they feel the same way as I do.
My mums family (sister, brother in law and nieces) are also blaming me and dad, saying we dont do enough, but working and running the house and looking after my daughter sometimes all gets a bit much.
I sometimes get fed up of being the strong one and have a tear or 2 to myself, as I feel I have noone to talk too!
I suppose I do have to accept this is what it is going to be like for a long time, she has MRI results soon, they will then know exactly how much damage has been done, but its very scary, as this is the unknown for me, but my dad I think is in denial as still doesnt want to accept that she has this illness

And I will never give up on my mum, she has been there all my life,

Will keep posting, as I feel it is good to talk to people in similar situations
Thanx again
Natasha
xx

 

[Grannie G]

Dear Natasha,

I`d be quite cross with your mother`s family for criticising you. I really don`t believe anyone has the right to tell other people what to do. If they think your mother isn`t getting enough visits from you, let them offer more help and visits, to spread the load.

MY son is an only child and I`m very conscious that he might feel too much is on his shoulders, so I know where you`re coming from.

You can only do your best and your own children need you too, so you have to give them priority.

I suspect you feel you need to be there for everyone but who is there for you. And you are quite justified in thinking that.

My salvation has been Talking Point. I know there is always someone here for me. I hope you will feel the same.

Love xx

 

[tmitch]

thanks

Thankyou,
just knowing there is someone there to talk to is lovely, will keep in touch
Natasha
x

 

[chip]

I was 32 and my son 6 when my Mum turned ill with this. I am also an only one, no brothers or sisters. What i did was support my Dad as much as i could. I also took my Mum out shopping. I went to all the appointments with them. I had to get friends to take my son as she went against him and this affected him. I ended up running their house ( and also had my own). For holidays we booked 2 weeks. We had the first week to ourselves then my Mum and Dad would come for the second week. This gave my Dad a bit of a holiday.
It was hard, but i learned how to have a " normal" life as i could when i wasn't at my parents house, but i found it was the best way to cope.
Now 14years from my Mum turning. I now have my husband with it, so ended up back to square one but this time it was my Dad helping me ( Mum died 3years ago). I could leave my husband with my Dad for a day, and even a week to let me get away as i couldn't get respite My husband went against my son ( again) but my son now in his 20's could cope with him.
You learn as time goes on how best you will cope. Everyone will have their own way. Its not easy. It changed me though to a strong person.
If i can be any help to you let me know.

 

[jenniferpa]

Dear Natasha

I was an only as well, so I know some of the pressures you're talking about. However I was also fortunate not to have any extended family to tell me I was falling down on the job - I do not think my response to that sort of input would have been either productive or polite. That's not to say that I didn't fall down on the job on occasion - one can set standards for oneself that are quite unobtainable, at least over the long haul, so guilt was my ever present companion. I also know about the difficulties of finding things to say. Let's face it, when someone is well much of what one says on a visit is somewhat trivial, or you spend your time doing things together. When someone can't communicate effectively or can no longer take an interest in the things that they used to, it's no wonder that visits can be a strain. You end up trying to focus on the practical things as at least then you feel you've contributed in some way, but then you feel you've missed the emotional connection and then you feel guilty about that as well.

As for your father and his withdrawal from the situation - I'm afraid that such things do happen. It may take him longer to come to terms with this, he may never come to terms with it. People can be perfectly functional decent members of society yet find it impossible to cope with such a diagnosis, or in fact, any sort of illness. It is possible when a formal diagnosis is forthcoming he may participate more. The difficult thing is that as the disease progresses logic will no longer be within your mother's capabilities. While now she thinks he's having an affair because he's working long hours, at some point in the future she may think it if he pops to the shops for half an hour. At the moment though, she is likely to feel both scared and abandoned, and although she is ill, that much she can probably remember. I suppose what I'm saying is that if at all possible he should be encouraged to put the time in now, while she still knows him, rather than later when, possibly, any carer might do.

 

[tmitch]

Thanks everyone

I am very angry with mums family, but wheres that gonna get me, I have tried, but they will not see it from any other angle, they are very black and white, I cant see it ever being the same to be honest, but heh thats up to them!

As for my dad, I do support him but also feel that he could do a little more, but then he never has all his life, so why should he now I suppose, and who am I to judge him and his life with my mum.

I think you have all had a lot more to deal with in your lives than me and I am very moved by the stories I am hearing, it must have been so hard having your mum have this disease, then to find out your husband also has it, but you seem to have a great coping mechanism and have found your own way of dealing with your life, which I feel is very brave of you. Its nice that your dad is now there for you
Thankyou for taking the time to reply to me
Best wishes

Natasha

xx

 

[DianeG]

In the same boat natasha

Hi Natasha,

I am 33 and my mum is 55 and was diagnosed at the beginning of the year after about 4 years of decline. Absolutely everything you have described in your posts I understand and have experienced also.

The feeling of guilt when not there for my mum and the guilt when I am there and run out of things to say. My dad is self employed and also throws himself into his work but I have to say that just recently he has become more accepting of my mums illness and is more patient and finally trying to spend mroe time with her. It has taken a while but we are getting there.

The rest of our family it seems just want to be critical of what we do and what we dont manage to do but never offer to help themselves!

Keep posting - everyones support is great and timely too. If you ever want to talk through PM to someone your age going through almost exactlyt he same, I'll be here for you.

Take care and smile - your mum loves it when you smile (all mums do).

Diane x

 

[Kate P]

Hi Natasha,

I'm so sorry about your mum's diagnosis and the difficult time you're having as you adjust to a new situation.

I am 29 and my mum has been diagnosed with frontotemporal dementia (she's been ill since she was 56). I am lucky in that I have a sister (age 32) and we both have two year old children.

I can assure you that having a sibling does not make you feel any less guilty about how much you are doing or how difficult you find it to cope with it all, although it does help that you have someone to share your feelings with without judgement (although not everyone gets that luxery either). Hopefully you will be able to find that here on TP. I know I have.

What you need to remember is that right now this is very new and very raw and it is so difficult to cope with. For a while I used to take care of my mum on the mornings I didn't work while looking after my daughter and my niece and to be honest it was awful. I'm not proud of it but every time I could see her on the other side of the door my blood pressure would soar and my heart would pund and I'd think "I don't want to deal with this!!" I also had postnatal depression which didn't improve the situation.

My dad was also in a massive state of denial for a long time - to the point that mum has been ill for four years before we managed to get her diagnosed as he just wouldn't accept anything was wrong even when she couldn't speak anymore and had been forcibly finished from work. Even now he has a level of denial about it all and although I can understand it I find it very frustrating which in turn can become anger. We found that getting dad to a local AZ meeting was a big step to getting him moving in the right direction. Also, as awful as it sounds as your mum deteriotates and your dad's life becomes more affected (eg, she can't be left alone, can't prepare food, becomes more confused) it will force his hand to do something about it. Unfortunately, I've learned the hard way that you can't make people face up to this if they don't want to.

I think it is very difficult visiting with someone with FTD as their lack of language means you talk at them rather than with them. I too found it very difficult for a long time as I too just couldn't see the point of keep talking to her and trying to engage her when I got nothing back. Personally, I would say that it does get easier as time goes on but only as you learn to accept it and deal with the grief of losing the mum you have known your whole life. Also remember it's not necessary to talk with her - take her for a walk, play a game if she can and just chat as and when about what you're doing or what's around you.

As for your mum's family frankly nod, smile if you cam bring youself to and do what you need to and what you feel is best. We have received completely un-practicle advise from my aunt and uncle who didn't even turn up for mum's 60th birthday because they find it all "too difficult to deal with". Frankly if you're not living with this in your life you can have no clue what's right or wrong for the person being cared for or for the carers for that matter.

Lastly (boy this is a long reply today!) in terms of guilt. I'd bet my bottom dollar that everyone who comes on to this site has battled with guilt if they are not still battling with it now. Guilt is really a wasted emotion and you need to learn to put it into context - if you are giving 100% (and that's a realistic 100% that still enables you to look after your son and hubby when he's home and run your house without breaking under the strain) then you have nothing to feel guilty about.

I'm sorry to have rambled but your story touched me in that I've been there and I know how hard it is.

On a last note the brain scan results may not show any real deteriotation - mum's hasn't really but the diagnosis still stands - it is a very difficult dementia to diagnose.

I hope all goes well with you and my thoughts are with you.

 

[tmitch]

MRI results

Hi there Kate

thankyou for your reply, as you know yourself how hard this is to deal with this terrible diesease, mums MRI results came through day before yesterday and show that the brain has shrunk where is should be filled in, the pictures are so detailed I was amazed at what I saw.
To be honest I seemed to know more about what mum has than the local GP, he didnt really know the symptoms of Pick's disease and I felt like telling him to go and have a good read, but keep my thoughts to myself.
Its a shame that they find this hard to diagnose after years, maybe if they knew more about it, they would not tell that after the depression she will get better, thats what we have been told for the last year or so.
We have an appointment to see a neurologist on 19th Dec, and of course that is another 6 weeks away, more waiting, the doctor said he would be able to tell us more, but after reading about Picks(front temporal lobe dementia) it just describes my mum exactly.
I feel I have lost my mum, but she has been there for me all my life and I intend to fight this, even though sometimes I just dont want to face going there. I kknow that maybe in a few years she will not know me and I want her to have the best life she can possibly have until she is unable to and who knows how long that will be, it seems everyone is different.
I am just so glad I have a lovely daughter of 14 that I can have chats with and do girly things when my hubby is away, she is very much a busy girl and dances most days of the week, that keeps her mind of it a bit.
Anyway I am going on again

Thankyou again so much


I am sorry for you too Kate, its a terrible disease, but am here if you need a chat anytime

Natasha

 

[Lynne]

Grrrrrr

My mums family (sister, brother in law and nieces) are also blaming me and dad, saying we dont do enough,

Considering they do very little themselves, I'd feel like telling them to take a running jump!

Don't let the guilt monster get to you Natasha; you're doing the best you can in an impossible, no-win situation.
You're a star, no one who knows what you are going through can say otherwise.

Best wishes