Mum carries on

[Mameeskye]

Thank you all for your kind words. I am sorry for making you cry!

This is a truly horrible illness and I have been through the early dark days when the person you love is disappearing in front of your eyes. I have wept buckets of tears and raged and tore myself almost in two. I needed my Mum as my kids were young but she wasn't there or was odd and strange. I have been in that big black hole. Yet surprisingly now, approaching the end, I find myself quite calm and not that stressed. I know that I love her and that throughout she loved me, jsut this illness turned her into a different person.

It is wonderful to know that you are there. I think that my only fear now is that I may be typing the emails in another year saying exactly the same thing and boring you all senseless.

Yet I cannot stop visiting. I only go twice a week due to time constraints (Mum is in a NH 35 miles away) and to try and give my family a normal life too. I am therefore Mum as surely as pre illness she was always there for me. I woudln't want anything less for to be less to me is not to be the person she brought me up to be, the person who cares.

Thanks to all of you as you fight this illness with your own woes and fears. It is really good that you share your strengths and fears with me.

 

[Nell]

Dear Mameeskye,
You have a very special gift for touching the hearts of others with your words. Thank you so much for sharing your journey with your dear Mum with us. May the time left continue to give you opportunities for the closeness you deserve. And may your Mum's more troublesome angels retreat and leave her with just the Guardian angels!

 

[Mameeskye]

Just when you think you are accepting...

Mum's home are aiming to get an award for dementia excellence. At the moment they are trying to get photos of the residents in their youth to help them remember who they are and as a side factor to remind the carers of who they were.

I went hunting through Mum's things and foudn some photos and took them up yesterday.

She was sitting, tilting, in her chair, speech very slurred. I spoon fed her one of those Tesco Finest yoghurt with the added cream in and while doing it suddenly I saw myself feeding my Mum, as she was, rather than as she is now. It was swift and sudden and it hit me like a blow to the chest.

Just when you think that you have accepted the condition you find things remind you of what was and what should have been!

The moment of pain passed and she enjoyed her yoghurt. I then gave her some chocolate buttons and a look of sheer joy passed on her face as she realised what it was that I had put in her mouth. That was so good to behold, that something so simple can give so much pleasure.

How long can this last? How long can I continue? I don't know but I know that I must keep going until .....

Doesn't help that my better half is away this week and I am home alone...hope she is ok this week, yet part of me hopes that she is not....to be torn between two such contrasting hopes.

(((hugs))) to you all this week

Mameeskye

 

[Skye]

Hugs to you too Mameeskye. It sounds as if you need them.

Come and talk to us, as your better half is away. Don't be lonely.

Love,

 

[Grannie G]

Oh dear Mameeskye, you have painted such a touching picture.

You have given your mother comfort and pleasure at this stage in her dementia. The strain on you is telling, but you were still able to give her pleasure.

Take care

Love xx

 

[gigi]

It is really good that you share your strengths and fears with me.

And that you share yours with us...Mameeskye..

Can I share some words with you..from my friend in Scotland..

"Big Angels are with us in our great dismay..
But little ones go in and out all day"

My love and best wishes to you and your family..you are an inspiration..Gigi xx

 

[Nell]

Dear Mameeskye,

I had a moment like that this week. I was away with colleagues in a country town delivering training. For some unknown reason, I suddenly was overwhelmed with thoughts of "I don't want to lose my Mum". The fact is, she is a long way from the end, altho' like others, a bit of the "true" person seems to slip away between each visit. The feelings were ENORMOUS and I cried bitterly.

Then had to "pull myself together" and go and teach! Did so without any problem, thank goodness.

But it goes to show how this insidious disease can suddenly make its presence felt in the most unlikely situations.

I hope your dear Mum is progressing as well as can be expected. The chocolate was obviously an inspired idea!!

 

[Mameeskye]

Thank you ladies for your continued support through this.

My temper has started to fray badly and last night I was persuaded by my husband into my inlaws house when I didn't want to do anything but just sit by myself. I lost it as my MIL asked seeing my tearful face "Is something wrong with your Mum?"

I just turned round and went out and walked.

I had just comeback from trying to get her to eat her tea. She scarcely eats these days. I little bit off the fork or spoon of savoury stuff if you can persuade her to open her mouth. Once the food is in her mouth she forgets that it is there until you wave the fork/spoon in front of her face with the next wee bit and then she starts to chew again.

Compared to how she was eating a few short weeks ago, when she still seemed to like her food it is awful. She has forgotten how to open her mouth and even for a cup of tea she sometimes forgets now that she needs to open her lips slightly for the feeder spout. It can take half an hour or more to get a yoghurt in, where before this didn't take longer than about 5 minutes.

I didn't see the weight charts but it was warm and she was just covered with a sheet when I realised the lump that I was feeling was her hip bone. Her tummy sits a good 2 inches lower than the top of it! The flesh is startin to melt off her.

Am I wrong to pray for her to go?

 

[gigi]

Hello Mameeskye,

I don't think you're wromg to pray for your mum to go..

It is so distressing watching someone shrink before your eyes..it was the same with my dad. So, so cruel. And you feel so helpless..

I hope and pray that your mum is not in any pain or discomfort..
but have no words to comfort you..my heart goes out to you.

You have given such a lot to me and others..

Thinking of you Mameeskye..

Lots of love Gigi xx

 

[Skye]

Am I wrong to pray for her to go?

No, Mameeskye, you're not wrong. It can't be wrong to want someon'e suffering to be over, and I'm sure your mum is praying for the same thing. I'll add my prayers to yours, if that's OK?

Don't worry about losing it at you mil's. When we're stressed and upset, any insensitive comment is enough to tip the balance. You did well to walk out, rather than to explode.

Take care of yourself now. You can't do any more for your mum apart from give her love and comfort, and your lovely children need you.

Hove and hugs,

 

[Grannie G]

Dear Mameeskye,

I am so sorry you are suffering so much, watching your mother fade away.

Of course you are not wrong in wanting an end to this. Your mother is not `living` in any sense of the word, she is existing. I only hope, as Gigi said, your mother is not in any pain or discomfort.

I know you are suffering both...........pain and discomfort.

 

[hendy]

Dear Mameeskye
I hope you dont mind me intruding on your thread. I have been so touched by your mothers story, and your own in caring for her and your young family. People just dont have any idea do they? It must be heartbeaking to sit with and care for your mum at this stage. I hope you can find the strength to keep on caring. I am sure your mum can feel the love you have for her. That will be a comfort to her.
take care
hendy

 

[Mameeskye]

Hi Gigi, Sylvia and Hazel

Thank you for your thoughts. it helps to know I am not alone and not awful for walking out last night. I have to admit that my IL's do get to me. But then they have never had to experience this, why should they understand? (OK I'm being charitable here!! They tend not to understand anything unless it affects them directly and I pray that they don't experience this for each other!)

Hazel your prayers for a peaceful end would be most welcome. We are hoping that one night Mum will just go to sleep. Sometimes she laughs at her angels and she gave my DH a wonderful smile last night and watched him. (He says she was thinking who is this strange creature but I'm not too sure!!!) She had sepent one night last week talking to them all night. She finally fell asleep while the home manager and I had a chat in her room, soothed by our voices. We are going to suggest to the night staff that they have their cuppas and a blether in there if she wont settle.

Hendy, I don't mind you or anyone else joing in.

Just thank you all for being there. I really need it at the moment!

 

[heartbroken]

Hi I just wanted to send you BIG BIG HUGS take care my prayers are with you

 

[Mameeskye]

and on..

Another week passes and the changes during my visits this week have been more noticeable. Major TIAs last Friday and again yesterday.

When I got in yesterday she was out cold and not responsive..but after about 1/2 an hour she started to wwake up. I got about 150ml of ensure plus into her but she fell asleep on a wee bit of one of the Tesco Finest Yoghurts.

The staff now note that she is barely eating, only drinking so they keep pouring protein drinks in and try a spoonful of yoghurt.

For the first time during a visit yesterday her hands did not move. In the last week the flesh has started to melt of her bones. Even in three days since my last trip north I can see her face become more angular. Scarily the staff reckon that she could still have about a stone of flesh to go and I already think that she is skeletal.

Life is a day at a time. I am travleeing to Skye with my sons for the weekend but am also scared that I will get there only to have to come back.

How long will this go on?

To all of you out there waiting at this inevitable stage((((((hugs)))))))

Mameeskye

 

[Grannie G]

Dear Mameeskye,

It is a slow torture for you. I hope it is not a slow torture for your mother. I hope she is unaware of her state and free from pain and discomfort.

You are doing all you can. I hope you manage a relaxing weekend.

Love xx

 

[Mameeskye]

Thank you Sylvia

Slow torture in many ways yet also too fast..that strange conflict of I want it over yet I don't want to lose that last link to Mum.

Mum appears to be totally unaware, unlike my Dad in the last weeks of his life. She appears to be completely relaxed and without any pain. There are no tears, repetitive movements and little to indicate any distress. For my Dad at this stage all was pain. For Mum's lack of awareness I can only be thankful and think more kindly of this disease as it appears to have stolen from her the fear of what is to come.

She lies mostly comfortable and unaware. I just hope that she is not screaming inside, but by the snoring as I have heard her do of late, I doubt that she is. She sleeps peacefully.

Mameeskye

 

[Skye]

She lies mostly comfortable and unaware. I just hope that she is not screaming inside, but by the snoring as I have heard her do of late, I doubt that she is. She sleeps peacefully.

Maneeskye, I don't think she's screaming inside, she is peaceful, comfortable, and knows she is loved. If it were otherwise, you would know.

She is peaceful. Hopefully you will find peace yourself, and enjoy your break.

Love,

 

[Canadian Joanne]

Mameeskye,

Your mother sounds like she is very peaceful and just waiting for her angels to take her. I am so sorry for you and the position you are in - waiting for the call - wanting it, not wanting it to be over.

Love,

 

[gigi]

Mameeskye,

Your mum does sound peaceful, and that's a blessing..

I wish I had some words of wisdom or comfort for you..as you have given me in the past..

All I can do is to wish you well, and send you my love ..

Gigi xx