dementia - final stages

[mariak]

Its been a while since I was on the site. For quite a while now my Mum has been in a nursing home. I am lucky she has been well cared for and the staff have been good. However, my Mum is now in the final stages of dementia. I know I am loosing her but its still very hard. How do I deal with this?

maria

 

[Norman]

Maria
sorry to hear your sad news.
Have a look at the following fact sheet ,It may help,I hope so.
Best wishes
Norman

http://www.alzheimers.org.uk/Caring_for_someone_with_dementia/Relationships/advice_grief.htm

 

[mariak]

Thankyou for you kind help, I have just read the page. A lot makes sense, I do feel sadness, guilt, loss .. I sat today and held her hand, yet I wonder where she is? Is she still with me or has her soul already gone?

Maria

 

[Amy]

Hi Maria,

My mum is also in advanced stages, maybe not quite as far down the line as yours. I went to see her and gave her her lunch today; she hardly opened her eyes.

I too wonder at times "where she is". A friend who has an adult daughter who suffered brain damage as a three year old, once said to me, "Don't worry, God has her in the palm of His hand". My own religious beliefs are and always have been very confused, but when I'm feeling low the idea of the palm of His hand does help.

I know I am loosing her but its still very hard. How do I deal with this?

All I can suggest is that you say everything to your mum that you want to say- tell her how much you love her, anything that you want to share with her. We don't know what our loved ones can understand, and even if your mum doesn't understand you will know that you said those things. Hold her, love her, and don't be afraid. You will cope. You may feel numb, you may feel distraught, but you will be alright.
With love and best wishes
Amy

 

[connie]

Maria, another scenario, but when my late husband was dying the nurses in charge told me to keep talking to him.. They were convinced he understood.

Well, to cut a very long story short, this fact was demonstrated to us quite convincingly, and to this day, I KNOW that my Len knew who were around his bed and what we said.

So, take the time you have to tell mum all that you would want her to know. Believe me, she will undestand. My thoughts are with you, Connie

 

[Brucie]

Maria
I'm confused by your message. You say

my Mum is now in the final stages of dementia

what do you mean by that?

There is a difference between final stages of dementia, and final stages of life.

People can be in the final stages of dementia and yet live for a further 10 years.

Although my Jan is in the final stages, I know there is quite a lot worse that can happen to her - without her being in any danger of losing her life.

In such a situation one needs to learn to know and love the new person they become with each passing day.

There is grief for that, as well as for their ultimate passing.

 

[Loiner]

All I can say is take it one day at a time, thats all you can do and what I did with my mum.

Hugs

David

 

[mariak]

where are you?

I just want to say a thankyou to all, Amy your words were very comforting, I know I am not alone, it just seems that way.
maria

 

[mariak]

help - does anyone remember this poem?

My Mum has an infection that her body is now to weak to fight off, that is why I believe she is in the final stages.

There was a poem she loved and I have been searching for it, does anyone else remember this

"A ship stands waiting in the harbour,
she is an object of beauty and desire
Her bows are heavy and laden,
She lifts her sails and sets sail upon the ocean
Whilst those on shore stand and gaze until she is just a speck on the horizon Then someone shouts "There she's gone"
Whilst others are shouting "There she's coming"

I am trying to find the exact words... does anyone know this?

Thankyou for your support
Maria

 

[daughter]

"I am standing upon the seashore.

A ship at my side spreads her white sails in the morning breeze and starts for the blue ocean.

She is an object of beauty and strength, and I stand and watch her until at length she is only a ribbon of white cloud just where the sea and the sky come to mingle with each other.

Then someone at my side says, "There, she's gone."

Gone where?

Gone from my sight, that is all. She is just as large in mast and hull and spar as she was when she left my side, and just as able to bear her load of freight to the place of destination.

Her diminished size is in me, not in her, and just at the moment when someone at my side says, "There, she's gone," there are other voices ready to take up the glad shout, "There she comes!"

So may it be, perchance, when down the tide our dear ones vanish..... We call it death - to them 'tis life beyond."

from Let Not Your Heart be Troubled compiled by James Dalton Morrison, 1938.

Hope this helps,

 

[Amy]

Thank you Hazel and Maria for the poem, it is beautiful - I've printed it off.

Bruce, have you always been so pragmatic?

I know there is quite a lot worse that can happen to her - without her being in any danger of losing her life.

I know that is the case with mum, but I daren't let myself think that far. In fact I find it easier to try and be in a state of readiness for her death, because I find that easier to face rather than the disease ravaging her mind and body any further. Maybe ostrich and sand come to mind!

It's hurting today, maybe this thread has made me raise my head for a few minutes, I'll have to bury it again.

Amy

 

[daughter]

Hi Amy, well put about the ostrich. It's so hard to face the future 'head-on' every day isn't it? However, personally I wouldn't want Bruce to be any less direct because it actually helps me. I'm not sure if I can explain that.

I think it's because, even though I sometimes cry, the rational side of me hates sentimentality and knows there may be worse to face. Although I just cannot imagine how I would cope now, Bruce's practical attitude (and knowing the situation he is in), gives me hope that maybe I will be able to 'look up' if it is necessary in the future.

Right, three, two, one, heads back in the sand!

 

[Lynne]

Maria, another scenario, but when my late husband was dying the nurses in charge told me to keep talking to him.. They were convinced he understood.

Well, to cut a very long story short, this fact was demonstrated to us quite convincingly, and to this day, I KNOW that my Len knew who were around his bed and what we said.

So, take the time you have to tell mum all that you would want her to know. Believe me, she will understand. My thoughts are with you, Connie

Just to add further to this line of thinking, Maria, we recently lost my Aunt (Mum's sister) to cancer. During the last week at the Hospice, she was on morphine and therefore very deeply asleep (if not unconscious) for a lot of the time. At no time was she alone, and often there were 3 or 4 visitors there at a time, even though she was unresponsive to direct remarks. However, when her sleep lightened from time to time, she would say a few words. It was not conversation, more like talking in her sleep. Nevertheless, she was using phrases which WE had used when talking amongst ourselves, so she was taking in at least some of what was said. Nurses often say that hearing is the last sense to go, so even though she may seem unresponsive, tell her you love her etc.

(Rider to that is, of course, don't say anything which you WOULDN'T want her to hear)

 

[Brucie]

Bruce, have you always been so pragmatic?

It is pragmatism born of desperation, so no is the answer.

When Jan first went into the care home, I kept both my BT phone and my mobile beside the bed at night, expecting at any time to get a call to say "come in quickly, Jan is in a bad way".

I was on edge all the time. Even now, if my mobile rings and I see that the call is from the home, I have kittens on the spot before answering.

Now I'm torn between wanting it all to be over for Jan's sake, and yet not wanting that to happen, for my sake. And...bizarrely, not wanting it all to be over, for Jan's sake, and wanting it to be over, for my sake, so I can live again.

There is no winning, so I simply plug on ahead.

 

[Amy]

Hiya Brucie

I'm torn between wanting it all to be over for Jan's sake,

Do you feel that Jan has an awareness of her situation? I wonder about mum. She seems quite smiley when you make contact with her, so I hope that she isn't experiencing anguish. If she is happy in 'her place', then I am being purely selfish when I wish that it would be over. But mainly I don't want it over; I don't want to lose my mother, though I've lost so much of her already. She is still my mum and my relationship with her gives me strength and comfort, and I don't know if she has any idea of her relationship with me, but I make her smile and I give her love.

I think I'll just sign this noff as "Confused".

 

[zan]

Brucie, Sorry no idea how to do the quotes, but thank you for putting into words how I have been feeling today (Now I' m torn .....) I feel selfish for wanting my life back, but selfish for wanting this time to continue. I want to take my Dad out to some of the nice places we used to go to but wonder if its because I want life to be how it used to be or if it's becauuse I think that he'll enjoy them. He's so sleepy that I wonder if he would get any enjoyment from it at all . Wonder he be better left to sleep in a chair all day? I supposre the only way to find out is to give it a try. Zan

 

[Brucie]

Hi Zan
you are quite correct, in my opinion, to consider trying whatever you feel may be good for your Dad. It is the only way to find out. Be prepared to return at once if he shows signs of anxiety, but go for it!

Amy - the difficulty with interpreting the feelings of the person who has dementia is that you just can't be sure that you are not assigning your own feelings to the person. With Jan, I am pretty sure that she is not happy for most of the time, highly frustrated and anguished, yet brave as they come in trying not to show this. There is no way of knowing whether this is the case, however. I hope it is not, and that her apparent torment is simply to do with the frustration of a highly intelligent woman trying to get even the simplest words out, or to pull together basic thoughts. I have to hang on to that.

 

[Amy]

Hiya Zan,

We are all stumbling along this path as best we can. If you think it may be too much for your dad to revisit old places, is there not something that you can do that is new? Is there somewhere beautiful close to your home that you could go and spend a special hour? Have you got old slides or photos, could you and dad sit together and look at them - have a drink, or get something dad might like to eat (my mum I'd get a nice icecream as she loves them) - do something that makes the moment special for you. Does your dad like music, or sport - is there a special CD you could listen to together, or a football match etc you could watch.

I suppose it is what Bruce says we have to love our loved ones where they are now. If you really doubt that your dad is up to visiting old memories, if you take him you could end up spoiling the memory for yourself; instead of it being the place your dad loved visiting, it could become that disastrous day out!

I am sure that when you are thinking more clearly, you will know what is right for you and your dad. You could always start on a visit and if you felt it was going to be too much, change your mind. Maybe the thing is not to have too many preconceived ideas and expectations, just enjoy the moment.
I'm waffling no. I'm going to take the dog out with my hubby.
Amy

 

[mariak]

just to say thankyou

Thanks so much for all your support. I knew the poem would be out there... my Mum always loved that poem. I lost my Dad to cancer when he was quite young so experienced the same feelings at the end with him... where was he... would I be there when he died.. again I was told that hearing is the last sense...so many confusing emotions.

However, I took all your advice and went with my children to be with my Mum today. We each had our special moment alone with her to say things that perhaps were special to each of us. I do believe she knew we were with her she tried to speak and open her eyes so I do feel that she knew we were there. I am concerned though that my Mum loved us all so much that she may find it hard to leave.. almost like she is half way through the open door then keeps getting called back...

Its comforting to know I am not alone.. with love and light to you all.

mariak

 

[Norman]

I understand exactly what Bruce means,I feel more or less the same way after 7/8 years. of caring.
I don't believe that my Peg is truly happy,she is in spells,but in betwen she often says "I am always doing something wrong".
She also tells me that she doesn't know what I am talking about,I can say the say about her and that cannot make either of us happy.
There is no winner,take the little bits of love that are offered and ride out the periods when only grief and misery prevail.
We can never go back to those happy times,which is what we really long for,we can only struggle on knowing that we cannot alter the future,we can only try to make it bearable.
Day by Day as always
Norman