Alzheimer's has stolen my Mama for 18 years now...

[lovingmama]

Alzheimer's has been stealing Mama for 18 years now.
18 years ago this year, my mother looked into my eyes and asked me what my name was. I knew she had been diagnosed with alzheimer's but did not expect her to forget me. I have watched Mama go through this horrid disease for so long. I have watched her forget names, forget people,forget herself. I have watched her stare at a spot on the wall for hours and sing. Mama always sang when she was well. Morning noon and night she sang as she went about her daily life, now there are no words, just words of song or humming the melody. At times I feel we are lucky that she still sings, still hums the melody and actually sings harmony. When we sing "You Are My Sunshine" I feel like a child again. Mama can't walk anymore, she can't eat or drink well and she gets scared so easily. She was always the rock, where did that strength go? I am so sad watching her suffer like this. I wonder how many more years I can watch this decline, how many more years can my heart cry for her! I keep thinking we will be the lucky ones and she will be cured, but deep inside I realize I have been watching her dying for 18 years. She lives at home and I would never consider a facility away from home for care... So, I am asking if there is anyone that can share their strength and knowledge. I feel like I have lost control now that Mama is on Hospice. I feel like we are giving up allowing Hospice to help. I can't find any caretakers that I have been totally happy with and I ultimately end up letting them go. My sister says I will not accept anyone and I must be more reasonable. I don't feel the caretakers talk to my Mama with dignity and I dislike the way they handle her. Basically, I don't trust anyone to love her and care for her with the total tenderness she deserves. Am I wrong? I have been pretty much her sole caretaker in the past months because of my dislike of the workers we have hired and let go. How can I gain some trust or how can I strengthen my own ability to see this through to the very end. I am so tired sometimes but so scared to leave her side for fear I won't be there when she passes. Please, any help would be appreciated. Maybe someone out there knows the answer to some of my questions, maybe someone is living this with their Mom.

 

[Nanak]

lovingmama
I can't begin to imagine what you have gone and are continuing to go through. 18 years, my goodness my Mum lived for just 3 1/2 years after diagnosis and we were all wrecks when she passed away.
I can only send a ((hug)) and say my thoughts are with you
Nanak (Kim)

 

[Butter]

Welcome to TP lovingmama. I see you are in Pittsburgh ... we have lots of members in the USA but I think you'll find most people on this website are in the UK.

It is really sad to hear about your Mama - it is a sad illness and many of us have sad times with it.

I think caring for people means trying to find a balance: a balance of what you can do/what you can't do and what is needed/what is not needed. It sounds as if your sister is concerned about you? Certainly, it is important to look after the carer as well as the sufferer. I wonder if you can find a way to get some rest? Then you will be better able to continue caring.

I hope you find this website as good as I have done .... I wish you all well.

 

[Big Effort]

Hi Lovingmama,

First, welcome to the forum. I read your post.... and sadly what you write resonates with the experiences of many people here.

But 18 years! My mother was diagnosed 4 years ago, and I suppose was showing some mild symptoms for at least 4 years before that.... But you must be absolutely worn thin after such a stint.

Regarding trusting carers, I can't say anything yet. We are in the process of looking for a full time live-in carer. To be honest, it is Mum who needs someone other than me. She is tired of me 'running her life', in that she denies anything is wrong, and is sure I have the memory problems. For the past 6 months she has got more and more argumentative, and I feel I need a carer to ensure someone else takes over the organising, and so I can revert to bringing her some pleasure.

How it will work out when a carer is there, I have no idea.

However you will get responses from lots of people here who are experienced. I suggest you read lots of posts too, as the themes tend to repeat, and one can learn so much.

I live in France, so it is great to have another international voice - there are people from all over the world. Strange thing dementia: it hits on young and old, male and female, doesn't respect race, creed, religion or income, even education. We all struggle for a more equal world, and yet Dementia is totally fair in its choice of victim. Anyone can be struck down by it, and then a whole family and micro community are affected.

Glad you have posted, Keep posting and it you don't get the answer you need, just post again. Take care and well done for looking after your mother in such a loving, caring way. She is a very lucky woman. Hugs from afar, BE

 

[60's child]

Hi Lovingmama
I am so sorry about your Mum. 18 years of seeing her decline but be absolute torture. I am not suprised you find it hard to accept others helping with your Mum. You love her such a lot ( very evident in your post) so feel that no one will care for her as you do. I am caring for my mum who is in the mid stages so not too bad at the moment. I have learned many things on here and one is that carers cope better if they have a break now and again, even if it is just a proper sleep. However heartbreaking it is leaving your Mum do try to get some rest as well. You sound so exhausted
Take care and keep posting on here if you can. It is a great source of information and support.

 

[benny]

I find my dad in the exact mind frame as yours, (no offence intended) and my mum is going into her 11th year of suffering. But the last 12 months have been devastating for all of us but especially my dad who refuses to accept how debilitating this disease is. We had to put her into a CH last October and he has made life so very hard for everyone including my mum simply because he wants whats best for her and still wants to care for her and look after her his way, but unfortunately it has landed him in trouble with the staff, the other residents, now last week with the police, and it has divided himself from the whole family and basically the rest of the world.
He is hellbent on thinking that she is going to get better, so he should be able to look after her, but now he has just been diagnosed himself last week with Alzheimers
and makes some very crazy decisions and assumptions and cannot see that they are detrimental to my mums condition.
He has pushed the situation to the point now where he is not allowed to visit the CH without supervision, which means I have to take him every day for 3-4 hours, which is really pushing the relationship up the hill. We argue all the way up and all the way back because he thinks this whole mess is "The Systems" fault nothing to do with Dementia.
I guess what I'm trying to say is that there comes a time when you have to accept that there is a point when things will be taken out of your hands, but remember that you have done everything you can as I have done and I find some sort of peace in knowing that, and yes there are things I see that I dont like but I have to accept, but I know my consience will be clear when I need to draw on that. Stay strong but stay focused on what needs to happen and is out of your control as it approaches. Cheers Robyn And hope you dont take this to heart, just sharing my experiences of this wretched disease

 

[Big Effort]

Dear Benny,

This was so beautifully expressed and I thank you for it:

I guess what I'm trying to say is that there comes a time when you have to accept that there is a point when things will be taken out of your hands, but remember that you have done everything you can as I have done and I find some sort of peace in knowing that, and yes there are things I see that I dont like but I have to accept, but I know my consience will be clear when I need to draw on that. Stay strong but stay focused on what needs to happen and is out of your control as it approaches.

I am a bit weepy reading it, but it was the message I needed to hear today.
I 'contracted' myself to seeing Mum out to the good, bad or bitter end at home, just as we did for Dad. But there is a huge difference, Dad didn't have dementia.

Life is showing me I may not be able to fulfill this contract/agreement/understanding with Mum. Perhaps Dementia "is taking it [the decision] out of my hands", and just maybe, maybe I should ease up on beating myself up for failing.

I made this bargain with Mum, not with Dementia. Mum was 80% herself when we agreed to this. Now I have 80% Dementia as a permanent resident and a few flashes of Mum. I feel so bad, so miserable, such a failure. It is how you expressed it, Robyn, that made me see that it may be out of my hands in that I can't keep Mum safe, I cannot afford financially to give up more than these past four years of full time care and zero income for us, and she is getting so much worse. I cannot make her happy any more.

So sad. I am just so sad about this. Not ever what I would have envisioned. I am a tough bird, determined, strong...... and yet I had a spell of amnesia, 12 hours in hospital with no ability to form memories. Cause: extreme mental distress. And I have to face up to this, the distress isn't going to get less.

Just showering Mum today was an ordeal (at best a risky adventure) for us both. She is clean now, but I shall have to shower her again, and again.....

Thanks Benny, and sorry Lovingmama for hijacking your post. Sending you all a pleasant day in the land of Dementia as we all walk our long, slow walk together. BE

 

[benny]

Hi BE

Nice to know U gained something out of this, thats exactly what this forum is all about and what I love about it. The feeling of knowing that you are not alone in this struggle, and having someone know how you truly feel! Do nhope that you can start easing up on yourself real soon! Cheers Robyn