Saturday, 29 March 2008

Where Have You Gone Sally?

Some of my friends go back a long way and there are two couples that Harry and I have kept in touch with over the last twenty five years.
We usually meet up, the six of us for a meal. We might go quite a long time till we see each other again afterwards, but the six of us always get together again eventually.
We recently were invited to Viv and Peter's house for dinner and I knew that Sally and Robert were also going to be there. I see Viv most weeks at Church and she had warned me that Sally was having problems with her memory and was having brain scans. I realized that it was a good few months since I last saw her.

When we arrived at Viv and Peter's house I was a bit stunned when I saw Sally. Robert was his usual self, but Sally didn't seem to recognize us at first and looked a bit blank when she saw us. I was shocked by her appearance. She was clean and tidy but her hair was not the same and she had not worn the kind of clothes she would have worn the year before. She is only sixty but seemed years older, suddenly. She slumped silently on the sofa beside Robert, who explained that her scans had proved that her brain was slowly deteriorating and she joined in with this conversation and said she had been advised to walk a lot and read, though she had difficulty remembering what she was reading.

The meal went fine and Viv excelled herself with her usual good cooking. Sally did seem to be enjoying her food, but seldom joined in with the conversation. The rest of us had plenty to catch up with and we kept going back to Sally and went over old times, that she didn't seem to remember at all.
In the space of a few months, Robert had had to give up his high powered job, with lots of responsibility- a job that he really enjoyed to the utmost, to look after Sally, as she could not manage on her own. She had to finish working as a child carer and could not now be left to look after her own grand children.
Not only was her memory affected, but it seemed that she had lost her personality as well. She had ended up like a little girl who was lost and bewildered if her husband moved away from her side.

I'm not sure how to handle this situation at all. Viv thinks we must all keep in touch and I know that we should, but Sally is only a shell of the person she used to be. How do we move forward? I don't really know. By ten o'clock she wanted to go home, so we did all break up earlier than we normally would have done.
The real Sally was intelligent, confident, with plenty to say about her life, work, family and ideas. She was always sparkling, nicely dressed and made up and with nicely styled hair.
She was never one for hugs and kisses and was slightly reserved, but now she clung like a limpet when we had to go. I couldn't believe the change in her.

Fortunately, Sally and Robert have always been so much in love and are committed Christians. I just  know he will stand by her, what ever happens, but I am stunned by the way this Alzheimer's Disease has come upon her so fast and unexpectedly. It is frightening, it really is. She knows what is happening to her, that's the sad part. She remembers how she was and wants to carry on as normal but she can't.
These people really did not deserve this severe blow in their lives. Over the years, they have given themselves to other people and to God. 
Isn't life cruel?


Suzy said...

Life is a mystery. that's for sure.

I am very sorry for your friend's debilitating illness. It must have been startling for you to see. I can't imagine how Sally and her husband must feel, trying to live their lives and go forward.

Prayers for them, always.

This reminds me of a movie I saw recently with the incredible Julie Christie- lovely actress- it is called- Away From Her-

Incredible story.


OvaGirl said...

This is the second post on Alzeimer's I have read today. It's incredibly sad and hard to know what to do.

Irene said...

Life can be very cruel to the people who least deserve it and then it seems to be a very bad joke indeed.

It is very sad to see the mental demise of someone who used to be so lively and intelligent and I hope to God this doesn't happen to me and I am very happy that I live in a country that allows me to choose for euthanasia before it becomes unbearable to live with.

Luckily, this disease does not run in my family and I hope Eduard and I will both be spared, as it seems to be the saddest way to come to the end of your life.

It must be very hard to see your friend disappear like this. I hope you can be some sort of support for her husband.

Douglas W said...

I am sorry to hear about the change that has happened in your friend Sally. I have been trying to come to terms with my mother's loss of memory... yes she is 93, but over the last couple of years she has progressively been forgetting things that had once been taken for granted. She recognises the fact and is distressed by what is happening to her. At other times she seems to compensate by inventing memories... telling long and detailed stories about things that happened in her life that just... never happened.

Yes, life is full of contradictions... joy and sorrow; happiness and sadness; pain and pleasure; good and evil... Sometimes we might want to ask 'why?'... but that's the way life is. We can only share what others experience... share their pleasure and share their pain; share their joy and their sorrow. It's not easy at times.

Suburbia said...

Such a sad post, Maggie. 60 is so young.

Maggie May said...

Suzy .... I haven't seen the film but will look out for it. Thanks for your kind remarks.

ovagirl ........ good to hear from you ..... thanks for your comment. It IS hard to know exactly what to do.

Irene .... Unfortunately this friend's father DID have the disease, so you are right in thinking it runs in families. How awful for her large family, wondering if they will be similarly affected.
As regards euthanasia, that is a different debate altogether.

Douglas W ..... thanks for visiting me. Sorry to hear that your Mum is affected at 92. It is hard to bear at any age.
I suppose that the older you get then the more likely it is to happen. The worse part is knowing you are getting like that, I feel & the loss of dignity.

Suburbia ........ Yes, sixty is no age is it? Not by today's standards.

RiverPoet said...

Oh my, Maggie. This story really touched me for a lot of reasons. First, I think Alzheimer's is a particularly cruel disease, especially when it happens to someone so young. Second, this has a deeper story of devotion and friendship. It begs the question, "At what point does commitment end?" I say that it never ends. Certainly her husband may have to call in help or use an elder care service while he works. He needs to tap into some caregiver support before he burns himself out. Things will only go downhill from here. As for friendship, offer what you can and realize that the old Sally is gone.

One of the great things I've encountered in Buddhism is the idea of impermanence. You and I are not who we were even a year ago. We may think that we are, but that is an illusion. We are always changing. Realize that Sally is just changing in new ways, unexpected ways. But she is still your dear friend.

Love and peace - D

Maggie May said...

Thank you Momma .... Yes, I suppose we are changing all the time. I have urged her husband to apply for all the help he can get.
It is a great pity that he has had to give up his job but she cannot manage on her own.
I'm not sure she values friends at all, as she seemed to want to go home most of the evening, but she might well have got something out of the meeting. I do hope so. We will all get together in a few months.

Dusty Spider said...

Alzheimer's is a very cruel disease as the sufferer has moments of clarity when they know exactly what is happening to them. Of course it's going to be very hard indeed for her husband who will need all your support. For what it's worth I think you should just do as you are doing and include them in your meetings for as long as they want to come. You are obviously a very caring person and will know how to handle things instinctively. My heart goes out to you. Flick xx

david mcmahon said...

Alzheimer's stole my mother away from us. She was an amazing woman. I owe her every ounce of the creativity that inspires me every day.

Manic Mother Of Five said...

What a total and utter bastard...... I have told my mum that if she loses her marbles, I am going to put a pillow over her and I am only half joking. Not sure if I could stand by and watch someone I love be robbed bit by bit of their faculties and dignity......

Good luck to them. There but for the grace of God hey.


Grit said...

and yet out of this will come surprising strengths. although i am a sad old grit, i believe this is true. wishing good moments for sally.

Swearing Mother said...

That's very sad and very difficult for you to know how to react to your dear friend's situation.

Very sorry to hear about that.

Maggie May said...

Flick ........ Many thanks for your kind words. Yes .. a very cruel disease.

David ......... so sorry to hear about your mother. What a terrible disease this is & I hope they find a cure or preventive medicine before too long.

Mother of Five ..... Who knows when or where it will strike. But I couldn't have used a pillow!

Grit .... I hope so. Thanks for you good wishes for Sally.

Swearing mum ..... good to see you. Thanks for you comment.

Cath said...

Maggie - I understand your pain and bewilderment. I nurse this disease in some wonderful, fine, intelligent, dignified people. The disease robs them of all that. I have seen loved ones with this too. It is tragic.

If it is any help, you asked some questions. I do not have all the answers as everyone is different in how illness affects them and also in how they handle it.

It is the hardest stage when Sally knows what happening to her. She is grieving also, hence the change and the need to cling. There is a certain regression, but she is not a child, she is still an adult. Her short term memory of recent events will be poor. BUT she will be able to join in and remember events from years ago.
Each person is different so it is difficult until you get to realise their idiosyncracies. For example, she may recognise you after reminders and if so, becomes more comfortable and able to take part.
Be gentle with reminders if you can. Whatever you have just discussed will be forgotten. But there are moments of lucidity when you will see the "old" Sally, just for a moment.
Reminding her of things in everyday use will help keep memory alive, like for example asking specifically "Let's go to the dining room to sit down at the table to eat dinner. It becomes an art to change the way you talk sometimes but it helps and you get used to it. (Instead of "Let's go eat" which gives no clues or reminders about where to go, what the room is called or why she is going in there).
Eventually, as the disease progresses, Sally will lose her insight which is a loss for her husband and you, but a blessing for her as she will not be reminded daily of what is happening.

I often warn carers that you will grieve twice - once for the Sally you knew and can know longer reach, and again later (sometimes many years later) when the Sally you will come to know finally leaves you.

Try to keep the smiles in your heart. Remember - accept the things you cannot change, have courage to change the things you can and the wisdom to know the difference.
God bless.

Maggie May said...

Crazy Cath .......... many thanks for that wonderful & professional advice which will be a great help. You are such a good, kind person. I am not the least bit surprised that you are a nurse.

I have that little prayer pinned to the wall. It is full of wisdom.

Carolyn said...

I'm almost cried reading this. How awful. My maternal grandmother had Alzheimer's Disease. I remember the last time I saw her. She did not recongize me and told me to go away. It was incredibly painful. I'll always be grateful to my mother who gave me permission to stop coming to seeing her. Even though I was 19, it was too difficult for me. My mom continued seeing Nana daily until she passed, but it was one of the most painful things our family has ever been through.

My mom and I have an agreement that if it happens to her, I'm allowed to drop her off at a care facility and walk away. As if!

Repeating what others have said, if I can offer advice, try not to worry about Sally. If the Alzheimer's advances quickly, she really won't know what is happening, and as such, won't suffer. I never felt like my Nana was suffering. Instead, focus your attention on Robert. He will need support. My Nana could not be left alone, so Robert may need help with shopping or 'watching' Sally while he works or attends to chores or errands. Certainly, full time care as others (and you) have suggested, would be best.

Sorry for the book, but I still have a lump in my throat. Alzheimer's Disease is incredibly painful. Best wishes...

Babaloo said...

I'm very sorry for your friend, May. Knowing what's happening to you but unable to stop it must be so hard, I can't even imagine it. I hope all of you can be support for each other.

Maggie May said...

Carolyn ......... Thanks for your empathy & kind remarks. My grand mother also suffered very late in life, but not in the same way as this friend. Some how that was more like just getting muddled up. Getting up when she should have been going to bed. etc.

Babaloo ..... I suppose that support of some kind is all that is possible really. Thanks for you comment.

Jan said...

Your title is perfect and yet so heart wrenching. I can't even imagine what it is like to be in a situation where someone you have loved with and laughed with and shared so much can be taken away from you by a disease. I think no family is ever safe from this and the more that it is talked about the better understanding we may have. My mother fears this so much. She also has a plan for us in case it ever happens to her. I can't ever say how we would truly respond. Thanks for your willingness to share. I wish you the best and the strength to all of you that are directly affected.


lime said...

here from david's.

alzheimer's is a cruel and insidious disease. i am so sorry you have to watch its devastation in someone you love.

Akelamalu said...

I popped over from David's to read your 'post of the day'.

Alzeimer's is a terrible disease, cruel and devastating. :(

Rachelle said...

Hi May,
I came over via David. I am going through this with my stepfather, I agree with Carolyn as well, hard as it is for my poppa to go through this, it is my mother who is having the hardest time.
Just having to care full time for someone in their condition is hard enough, but to watch the person you desire to spend all eternity with slowly fade away... that's hard.

Just letting Robert know that you are there, and sometimes bringing over a meal, or offering to help with housework will be a big help.

My mother sure appreciates anyone who is there for her right now.
Hugs for you, hugs for Sally and Robert.
God bless you all.

the mother of this lot said...

My grandmother also had this. I'm sorry about your friend Maggie. But it will get easier for you.

Maggie May said...

Jan, Lime, Akelamalu & Rachelle ............ Many thanks for coming over from David's & for your kind comments & advice.

Jackie ....... Yes, I guess you get used to any thing in time ....... thanks.

Hilary said...

Sent over from David's blog...

I'm so sorry that your friend is dealing with this disease. I've seen it hit close to home and it's devastating. Bad as it is when it takes a grandparent, parent or elderly relative or friend, there must be an added element of sadness when it strikes a contemporary. I feel for you and your friends.

Maggie May said...

Thanks Hilary for those kind comments

San said...

Maggie May, this does seem a very cruel turn in Sally's life. And yours too. And of course her husband's.

I am sorry about it. Hold onto your faith.

A Mother's Place is in the Wrong said...

Hello Maggie, sorry to have been absent for so long - am just catching up. And I'm so sorry to read about your friend Sally - all you can do is keep your memories of her alive. Love and thoughts, Margot xx

Maggie May said...

San & Margot ......... thanks for the comments ... its great that so many people care about the situation.

I do appreciate the concern & empathy that everyone has shown. Thank you all who have contributed.

Laura Jane Williams said...

I guess you juts have to ask yourself, "What would old Sally have me do?"

How hard for you.

G.I.M x

Not Afraid to Use It said...

How absolutely tragic for Robert to see the woman he loves slipping away from him. As painful as this whole situation is for you, I hope you can find the strength to help him through this. He is going to need people around him who remember the vivacious woman she was to help him deal with the new woman she has become.

Lew said...

Like some others, I found you by way of David's blog. My sympathy goes out to Sally, Robert and their friends. Alzheimers is a devasting disease. Your post about Sally and Robert is similar to what my Mom and Dad went through before Mom passed away in 2000. Dad was in his early 80's and Mom in her late 70's when the deterioration from Alzheimers began to be really noticeable. Dad was her primary care giver for a good while, but with further deterioration, it was clear he needed help and she resisted any mention of assisted living. Dad obtained day-time help 5 days a week with Mom's care and housework which eased the burden on him. Later, this care became around the clock. Mom had brief moments of recognition even late in the progression of the disease. The Christmas before she died, I was steadying her as she walked from the table to the den, and asked "Do you want to dance?". She got a twinkle in her eye and twisted her hips back and forth a few times. She would also point to Dad and say "that's my husband over there". Dad lived another 4 years after Mom died. He was still mentally sharp a few days before he died and said he just wanted to be with Mom. Other commenters have given lots of good advice. I would only add that you four friends keep seeing Sally and Robert. I know that Dad enjoyed visits from his friends who continued to stop by from time to time.

Maggie May said...

Girl with the mask, Not afraid to use it & Lew ........

Many thanks for your helpful and kind remarks. It seems that many people have shared this situation or knows some one who has. I am very grateful for the help & advice & the empathy that this post has created.

Jeni said...

Alzheimer's or senility, dementia, hardening of the arteries - all terms for the loss of the mental faculties and all are terrible to watch as someone you love disappears before your eyes. When my Grandfather started acting forgetful, strange, not recognizing family members, running away too, back then it was generally called "hardening of the arteries" but perhaps today it would qualify as alzheimer's. He had been a strong, very intelligent man, who loved to read, to garden, had been no stranger to hard work all his life and watching him as he lost knowledge, didn't recognize my grandmother or my mother -but yet, somehow, he usually still knew me. Who knows why, as I sure don't. But I've seen this happen to so many close family members and right now, my dad's youngest sister, the only one left in his family, does not recognize any of her nieces/nephews plus she is also now bedridden. And yes, it is as someone else here said, a loss that hits you twice.
Just be there as a friend Sally's husband can rely on -and perhaps, guide him to finding agencies that provide in home assistance too. My heart goes out to her, to her husband but also to you and your friends as you go down this difficult road.
BTW -David sent me too.

Maggie May said...

Jeni ........ Many thanks for writing this. Other people's experiences do help tremendously & I was overwhelmed by the response to this post. Thank you.