Support for children who's parents have EOAD

[MaWaters]

Hi. My girlfriend's mum was diagnosed with EOAD 3 years ago. As this progresses it becomes increasingly difficult for all. My girlfriend has no siblings and provides significant support for her Dad who is the primary carer. She attends a group primarily to support her dad and we both spend a lot of time with her parents to provide support. She is a truly amazing girl who cares so much. My concern is for her. I am there for her and try to understand and have done lots of research. But I can never truely empathise, it is especially tough that she is an only child so has no-one else to really share the experience with. I know she finds things emotionally challenging, such as:
* The changing relationship with her mother and now being unable to talk to her about life/problems/emotions she feels like she has lost a key relationshp.
* The emotional demands of supporting her dad
* Worries for the future care of her mum
* Concerns about the possible hereditory nature of EOAD.

The purpose of this mail is to try to understand whether there are groups or forums we could get involved with as a couple where she is the focus and she gets the support. I would love to link her with maybe a girl of a similar age who is in the same situation for example, just for her to have someone to talk with sometimes.

My girlfriend is 27 and an incredible person who I love very much. I'd really appreciate any help or guidance anyone could give me.

Thank you. Marc x

 

[Jo1958]

Marc, hi
I'm so sorry that you've had to find this site but welcome from me and I hope you find the help and support you are looking for.
There are many young people struggling with caring who are members here and I'm sure they will be along later.
You sound like a wonderfully supportive family and I wish you all the luck in the world.
Best wishes, Jo

 

[Sandy]

Hi Marc,

Welcome to Talking Point (TP) from me also.

The issues that you listed:

* The changing relationship with her mother and now being unable to talk to her about life/problems/emotions she feels like she has lost a key relationship.
* The emotional demands of supporting her dad
* Worries for the future care of her mum
* Concerns about the possible hereditory nature of EOAD.

are all within the realm of TP and discussed frequently.

The best advice that I can give you is to try and get your girlfriend to become a member of TP and join out supportive community through reading and posting.

Many people find that within a few months of contributing regularly to TP that they will find other members who really 'understand where they are coming from' and real friendships can then develop.

It's good that your girlfriend goes to a carers group with her dad, even if she feels that it's mostly for his benefit at the moment.

It can be especially hard to support someone who's a 24/7 carer, as well as supporting the person with dementia themselves.

I'm not sure about the only child issue. We see plenty of members on TP who's siblings can be as obstructive (or disinterested) as supportive. My husband is also an only child and he's always got plenty of support from me and our daughter in coping with his parents' dementia. Your girlfriend is lucky to have you.

Have you looked at the factsheets on the main Alzheimer's site:

http://www.alzheimers.org.uk/factsheets

Also, your girlfriend might want to consider ringing the Helpline for more direct support:

http://www.alzheimers.org.uk/helpline

Take care,

 

[jc141265]

Hi Marc,

I was once 27 with a father with EOAD, I'm now 35 and still have a father with EOAD. There is a section in Talking Point called 'Younger People With Dementia' that generally has posts from others dealing with EOAD, both children of and spouses of people with dementia.

I'm not quite sure why, but it seems to me that the sons and daughters of young onset dementia sufferers don't seem to post as regularly as the spouses of EOAD or the sons and daughters of older dementia sufferers. Maybe that's just because there aren't as many of us, or maybe because we all find each other so different, a 20 year old often doesn't have a lot in common with a 30 year old, a 35 year old like myself often doesn't have much in common with a 35 year old with children, and so on... I don't know. But the Talking Point forum is a good place to vent your emotions, even when you may not get that many replies (sometimes you get heaps of replies, and sometimes you don't).

As for real life counseling groups, I live in Australia so can't advise you on what's available unless you also live here. The Alzheimer's Association does have some group meetings here, so maybe the Alzheimer's Society does in the UK, it might be worth giving them a call. One thing I found helpful when times were really tough was to go speak to a counsellor privately. Again I don't know if they have the same thing where you live, but here a lot of employers offer their employees access to free counseling for any personal issues. If your girlfriend has access to something similar then I would encourage her to use it.

Even if your girlfriend doesn't want to post on TP, it might be worth her while reading through the archives...there have been quite a few posts from people worried that their parent's dementia may be hereditary for example.

All of the things you mention as emotionally challenging for your girlfriend were also issues for myself, and even when you have siblings like I do (a brother and a sister) these are still issues as you still tend to deal with these things individually, as the nature of the disease is that you don't want to burden anyone else in your family with further worries about how you are coping.

There is of course an advantage to having siblings, if everyone is thinking the same way, as unlike your girlfriend, I have been lucky in knowing that if I can't always be there for my mum or dad my brother or sister might be, but that isn't always guaranteed. Still it is no doubt easier to know that I am not in this alone completely, though there is still an element of loneliness as each person's response to a parent with dementia is different to some extent.

If you think it would help, I am always available to talk to and Alzheimer's Talking Point has a private message function that would allow your girlfriend to talk directly to me. I'm not 27 anymore, but I still remember, the only difference between 27 year old me and 35 year old me is that maybe I am a little bit more knowledgeable now, and I am starting to get wrinkles and the odd grey hair appearing! Alternatively, although you say that you can't ever really empathise fully, you seem to have a pretty good idea of the things that are stressful for your girlfriend, and having someone that understanding will be very helpful for her.

Anyways I have rambled on enough, I hope you find some help, or decide that Talking Point might be useful.

Best wishes,

 

[MaWaters]

Thank you so much for the responses. I so appreciate the time taken and the thought and support. I have looked through the fact sheets and they are really good. It is funny, you think you understand something, then when you really take time you find there is so much more.

Jc141265 I have re-read your post a number of times and really appreciate you reaching out. So much of what you say makes so much sense to me, especially the bit about not wanting to be a burden by having people worry about how you are feeling. I think that is exactly part of what is hard. My girlfriend always thinks she is not doing enough and feels guilty that she should do more, when I think she does just so much for her parents and that they are lucky to have a daughter like her. I do believe she feels a little lonely with her feelings and that is why I am trying so hard to better understand and really be the person who supports her. This site helps so much, I really do think it is amazing, I have spent hours reading people's stories and really feel like I have learned something and understand so much more. It is also lovely to see that there are so many kind and caring people in the world.

My girlfriend is in the US with her parents right now, doing all the things her mum wanted to do whilst they still can, which itself is so sad. We have spoken on the phone and I told her about your message and advice. We are going to talk about it properly when she is home and I really appreciate your offer to be in contact... a lot.

Thank you Mx

 

[Jane3006]

Just wanted to say your girlfriend is very lucky to have such a caring boyfriend. My husband struggles like you do, and I always feel that I never do enough for my mum, even when she was at home and we were there 24 hours of the day it was never enough in my eyes. To both of you there is alot of support out there, but I have found the best support for me has been on here and the age thing really has not come into it. Have to say being an only daughter really doesn't make much difference as having siblings can be obstructive in some cases (I am sure you have read some of the comments regarding this on here). Its a horrid situation, the only advice I can give is keep posting on here and that goes for you as well as your girlfriend because we all need support from time to time. Although it probably feels like all doom and gloom remember there are also funny/happy times too. Thinking of you both