Feeling Hopeless

[Kelp222]

My former partner and still very close friend has AD at the age of 54. I've been taking full care of her, our household, our kids, for years, until about 18 months ago. Now we live separately but are constantly in touch. This summer I've spent so much time driving her around, making sure she has what she needs, being a patient friend, arranging outings with her and our kids but nothing makes her happy. I'm feeling so sad and discouraged that I can't do enough to make her life better. She says I'm being a great friend and that she appreciates all that I do but that her life just sucks.
Sometimes I find it hard to balance my efforts to improve her life with my efforts to raise our kids, they're both 11, and my efforts to have some semblance of a life for myself. I go to bed discouraged and angry but wake up with a new idea to help her only to go to bed discouraged again.
It's a horrible thing to say, especially for my kids, but sometimes I just wish she'd progress to the level where she doesn't realize what she's lost. Sorry to be so heavy. I just needed a place to unload some of this. Kelly

 

[Lynne]

Not horrible Kelly, just saying what many of us feel from time to time.
When someone is going through a phase (or has got to a stage) where they are getting no joy out of life, it IS very draining emotionally to continue to support them.
You can say it here, knowing that most of us will truly understand your feelings.

Best wishes

 

[helen.tomlinson]

Hello Kelly

This disease sucks doesn't it. Your former partner is aware of this and by what you say

a new idea to help her only to go to bed discouraged again

you are finding it more difficult to accept. Perhaps you could begin to let go of finding more and more ways to help her (because you can't take it away) and that in itself might change things. Sometimes needing to do things is easier to cope with than the feelings involved in not being able to do anything to take it away. It's a horrible reality about this disease that is so hard to accept.

Sounds to me like you are doing a great job in just being there as a friend and father to the children - this is really wonderful in itself and your former partner realises this.

Very best wishes to you

Helen

 

[Kelp222]

Hoplessness

Thank you Lynne and Helen. I think you're right about having to just accept that there is no way to make it better. That approach just goes against my natural style. I'm an optimist, I like to see a silver lining, I like to figure out a solution and work towards it. It's very hard to let go of that.
Helen, just to be clear and honest, I want to let you know that my kids have two moms, no father. You had no way of knowing that!
Thanks for your support and thoughts. Kelly

 

[helen.tomlinson]

Hi Kelly

That approach just goes against my natural style. I'm an optimist

I am very much an optimist but letting go from trying to make it better enables me to get on with the reality of the here and now which means I can be optimistic. I don't even know whether that makes sense to anyone else

Thank you for making it clear Kelly, no I didn't know.

Love Helen

 

[jackie1]

Hi Kelly,

Wish I could think of something so say or suggest to make it better but I can't. All I can say is that you are doing an amazing job holding everything together.

Because she is still aware what is happening to her I honestly don't think there is anymore you can do to make it better. John was prescribed anti-depressants at Christmas and they did lighten his mood once they kicked in, but that effect is now about worn off, so they're probably not a solution either.

What ever happens you must take care of you. Not just for your children and your ex, but for YOU, you need a life and to feel some happiness.

Love
Jackie
xxx

 

[Grannie G]

Dear Kelly

nothing makes her happy.

Please don`t take this the wrong way, but perhaps you should stop aiming to make your former partner `happy`.

From my experience happiness and Alzheimers are incompatible.

You can only do what you can to help her if you can do it without her appreciation. If you can expect nothing in return and feel relief if she shows she is at ease with herself you will have succeeded.

It is a tall order I know but dementia is a cruel illness which robs many of gratitude.

Love xx

 

[Skye]

Hi Kelly

Sylvia's right. Your partner has dementia, and is not going to respond to your efforts in the way you would like.

I don't agree that happiness and Alzheimer's are incompatible, my husband and I had a lot of happiness after his diagnosis, but Sylvia have had very different experiences of the illness.

What I think you have to do is, not to decide in advance on trips out, etc, just go with your partner's mood, and do whatever she feels up to on that day. For example, a short trip to the park to feed the ducks might be more appropriate on some days. A trip to the shops with coffee and cream cakes on another.

If she is really depressed, perhaps she needs to see a doctor? There are all sorts of things that might help.

I'm sorry, I know she's your former partner, just abbreviating a bit. No offence meant.

Keep in touch, and let us know how you get on.

 

[Kelp222]

Hoplessness

Thanks to all who have responded to my sad post. Your words have given me a slightly new direction from which to view this situation. I know Abby appreciates all I do for her and frankly, it's not even very important that she does.
What I have been reaching for is something to make her enjoy being alive. Something that would make her laugh or fill her heart with warmth. I guess I may need to accept that that is no longer possible. Maybe it has been selfish of me to want this. Perhaps it's best if I focus on the kids' happiness and my survival instead of that elusive joy that I want to produce for her.
This is an unpredictable path we've been plunked onto with many lessons to be learned along the way. Just imagine how wise we'll be at the other end. Thank you for your support and insight. Kelly

 

[helen.tomlinson]

Hi Kelly

I think what you wanted for Abby is perfectly normal. We all want our loved ones to feel this way but as you say Abby is not able to feel this. If you can let go and spend the energy watching for those precious moments (I see normality now as precious). A walk, Alan making a cup of tea, gardening, a smile - just a little of life as it used to be. I know it will never be better but it could be a lot worse

Abby is fortunate to have such a caring and loving former partner.

Love and best wishes to you

Helen

 

[Canadian Joanne]

Dear Kelly,
Yes, this is a most unpredictable disease. I too only want my mother to be reasonably content, if nothing else. But the disease doesn't necessarily co-operate with us.

Quite often people with AD respond very well to babies and animals. When my mother still walked, we would take her to the nearest dog park and spend a little time there. It was very sweet, but heartbreaking, to watch her react like a small child. Mum also became baby-mad. The home she is in has a mother & baby group come in once a week. The residents really enjoy seeing the babies. You might want to try these ideas.

People change - my mother was NEVER a baby person (unless they were her own) so her baby stage took me completely by surprise.

You also must let go of trying to make her happy. I think that's the Guilt Monster perching on your shoulder. Do the best you can, as you have been. That's all you can do.

Remember, there will still be moments of joy.

 

[Brucie]

Hi Kelly

If you can expect nothing in return and feel relief if she shows she is at ease with herself you will have succeeded.

I'd go a step further and suggest "hope for something, expect nothing, and grab like crazy the unsuspected moment when you find you get the gift of something [a smile, a hug] you haven't dare hope for"

sometimes I just wish she'd progress to the level where she doesn't realize what she's lost

it's something many of us think, but even when you think they get to the stage you are talking about, you will never be sure.

I think you're right about having to just accept that there is no way to make it better.

I said to the care home staff where my wife lives something along those lines and they said - "don't you realise that just by being there, you are making it better?" ...and when I came to think of it, they were correct. Who else would hold Jan's hand for so long and tell her she is loved? who else would ensure that the needs she now has are met so closely?

You just need to view things a bit differently, recalibrate your expectations.

... all just my thoughts...

 

[andrear]

HI There and Welcome to TP
I look after both mum and dad (dad has dementia and is very aggressive). I have found that by talking to both mum and dad and finding out what they particularly liked doing during their 'normal' days I could help them more.
Dad loved music as does mum. Now dad has the TV on from the minute he gets up to when he goes to bed even though he doesn't watch it. I have (via my husband) downloaded mums favourite music and when I leave each day I 'plug her in' on an MP3 player so that she is able to enjoy a bit of her peace time.
Dad now can't stand music yet they used to go to the theatre, music halls etc. etc.
I have found that dad seems to like the garden even though he's not a gardener and has always had someone to do it for him, OK he may take up everything and paint anything i.e. stones white, as he was told to do so in the war, but if that makes him happy then takes OK with me.
Just try to listen to your mum in any way you can, has she any special hobbies that would enable you to give her a bit of normality (in her mind).
You say you now look after the children aged 11 surely they will be the light of her life as such. Let them get involved, kids say the strangest things, but it doesn't matter.
I's so sorry I cannot give any other advice.
Love AndreaX