The saddest visit so far

[Luckylisa]

its been a long road with this Alzheimer's for my Mum, 13 years. She's been in a care home for 3 and for most of that time very happy in the diseases blissful ignorance as every last part of dignity is stripped away from this once beautiful confident lady. Nevertheless the last month saw her refusing to eat and she is now only in bed, crying out for her mother and sometimes for me. The doctor has prescribed end of life medicine but she isn't being given it yet. We cannot know how long she has so our lives are on hold in this twilight world of waiting yet still trying to carry on our normal lives with work every day amongst people oblivious to the pain we shove down deep so as not to let it show.

The ch asked me to pick out an outfit for her final journey yesterday, so whilst she lay in her bed in her own restless world I tried to imagine what she would have wanted to wear in the cold restraints of a coffin. I still couldn't cry and chatted to her with a happy voice despite the lack of response. It was hard to choose as her poor body has withered away so much I don't know what will fit, but settled on a lovely outfit never worn in the home as it wouldn't have been appropriate there. Who could have imagined its purpose when I rescued it from The family home several years ago?

After 2 hours I told Mum I was going and kissed her, at that moment she called out "I love you, I love you" in a strong clear voice. Then I did cry.

This disease is so very cruel, yet we are always surprised when the person we love so much breaks through despite everything and for that I will always be grateful.

I don't think I have long to wait now, my husband said it's a bit like when he was at work waiting for the call from me to say the baby was coming. I suppose it is in someways but the end rather than the beginning.

 

[Grannie G]

It`s a heartbreaking time for you @Luckylisa.

I hope your mother will be given end of life medicine soon. It helps relieve distress and I`m sure this is why the doctor prescribed it.

I experienced something similar with my husband. As soon as the end of life medication was administered he was calm, peaceful and comfortable. We could tell by the relaxed expression on his face and his smile when he heard our voices.

There is no point in prolonging this distress for your mother.

 

[Delphie]

Your post brought tears to my eyes. Sending you the warmest cyber hug. Xxx

 

[mumsgone]

morning.
Bless you for the way you care for your mum.It must have been lovely but sad for you to hear her say she loved you. Hold onto the fact that she knew you were there in her final time and that you know she was still your mum. It may seem hard but think of all the things she loved in her life and plan a happy funeral for her.You are lucky to have had her and only other people who have been through this will understand.Yes the disease is cruel as it robs one of the person before they actually pass. I still think it is so much hidden as many people have no clue as to how devastating it can be not only for the person but the family and loved ones as well. Your husband is right , w all felt as though we were on an emotional rollercoaster when my mum was in the end stages. Bless you and ihope she has a peaceful release xx

 

[Izzy]

Oh what a poignant post. I went through this with both my mum and my husband. I know how heartbreaking it is. Wishing your mum peace and wishing strength for you.

 

[Jezzer]

its been a long road with this Alzheimer's for my Mum, 13 years. She's been in a care home for 3 and for most of that time very happy in the diseases blissful ignorance as every last part of dignity is stripped away from this once beautiful confident lady. Nevertheless the last month saw her refusing to eat and she is now only in bed, crying out for her mother and sometimes for me. The doctor has prescribed end of life medicine but she isn't being given it yet. We cannot know how long she has so our lives are on hold in this twilight world of waiting yet still trying to carry on our normal lives with work every day amongst people oblivious to the pain we shove down deep so as not to let it show.

The ch asked me to pick out an outfit for her final journey yesterday, so whilst she lay in her bed in her own restless world I tried to imagine what she would have wanted to wear in the cold restraints of a coffin. I still couldn't cry and chatted to her with a happy voice despite the lack of response. It was hard to choose as her poor body has withered away so much I don't know what will fit, but settled on a lovely outfit never worn in the home as it wouldn't have been appropriate there. Who could have imagined its purpose when I rescued it from The family home several years ago?

After 2 hours I told Mum I was going and kissed her, at that moment she called out "I love you, I love you" in a strong clear voice. Then I did cry.

This disease is so very cruel, yet we are always surprised when the person we love so much breaks through despite everything and for that I will always be grateful.

I don't think I have long to wait now, my husband said it's a bit like when he was at work waiting for the call from me to say the baby was coming. I suppose it is in someways but the end rather than the beginning.

@luck

 

[Jezzer]

its been a long road with this Alzheimer's for my Mum, 13 years. She's been in a care home for 3 and for most of that time very happy in the diseases blissful ignorance as every last part of dignity is stripped away from this once beautiful confident lady. Nevertheless the last month saw her refusing to eat and she is now only in bed, crying out for her mother and sometimes for me. The doctor has prescribed end of life medicine but she isn't being given it yet. We cannot know how long she has so our lives are on hold in this twilight world of waiting yet still trying to carry on our normal lives with work every day amongst people oblivious to the pain we shove down deep so as not to let it show.

The ch asked me to pick out an outfit for her final journey yesterday, so whilst she lay in her bed in her own restless world I tried to imagine what she would have wanted to wear in the cold restraints of a coffin. I still couldn't cry and chatted to her with a happy voice despite the lack of response. It was hard to choose as her poor body has withered away so much I don't know what will fit, but settled on a lovely outfit never worn in the home as it wouldn't have been appropriate there. Who could have imagined its purpose when I rescued it from The family home several years ago?

After 2 hours I told Mum I was going and kissed her, at that moment she called out "I love you, I love you" in a strong clear voice. Then I did cry.

This disease is so very cruel, yet we are always surprised when the person we love so much breaks through despite everything and for that I will always be grateful.

I don't think I have long to wait now, my husband said it's a bit like when he was at work waiting for the call from me to say the baby was coming. I suppose it is in someways but the end rather than the beginning.

@Luckylisa You are in my thoughts and prayers at this saddest of times. Hearing your mum call out "I love you" - so moving. She does of course. Yes this is a cruel and heartbreaking illness. May your dear mum soon find peace.

 

[canary]

((((((hugs)))))) @Luckylisa
I went through this twilight, limboland world with my mum too
These moments of lucidity are precious

Dont forget to talk to her, comb her hair, put moisturiser on her dry skin and play her favourite music - hearing is the last thing to go.

 

[marionq]

@Luckylisa you do have something wonderful to get you through this awful time. You will remember your mothers words for the rest of your life. I visited my brother in intensive care in 2007 and at that stage did not think he was going to die. I held his hand and he mouthed through the tubes "I love you". We were very small children when our father was killed in an accident so have always been close. I can honestly say that moment with him is seared on my mind.

Best thoughts to you at this hard time.

 

[Prudence9]

A beautiful and very sad post @Luckylisa , I'm so glad your Mum was able to tell you she loved you.
She's clearly been a loving and loved Mum.
I wish I could wrap you up in a warm cuddle to bring you some comfort, this is such an intense and difficult time to go through.
Thinking of you and wishing you all peace and strength. Xxx

 

[Hazara8]

its been a long road with this Alzheimer's for my Mum, 13 years. She's been in a care home for 3 and for most of that time very happy in the diseases blissful ignorance as every last part of dignity is stripped away from this once beautiful confident lady. Nevertheless the last month saw her refusing to eat and she is now only in bed, crying out for her mother and sometimes for me. The doctor has prescribed end of life medicine but she isn't being given it yet. We cannot know how long she has so our lives are on hold in this twilight world of waiting yet still trying to carry on our normal lives with work every day amongst people oblivious to the pain we shove down deep so as not to let it show.

The ch asked me to pick out an outfit for her final journey yesterday, so whilst she lay in her bed in her own restless world I tried to imagine what she would have wanted to wear in the cold restraints of a coffin. I still couldn't cry and chatted to her with a happy voice despite the lack of response. It was hard to choose as her poor body has withered away so much I don't know what will fit, but settled on a lovely outfit never worn in the home as it wouldn't have been appropriate there. Who could have imagined its purpose when I rescued it from The family home several years ago?

After 2 hours I told Mum I was going and kissed her, at that moment she called out "I love you, I love you" in a strong clear voice. Then I did cry.

This disease is so very cruel, yet we are always surprised when the person we love so much breaks through despite everything and for that I will always be grateful.

I don't think I have long to wait now, my husband said it's a bit like when he was at work waiting for the call from me to say the baby was coming. I suppose it is in someways but the end rather than the beginning.

My late mother would say those very words, "I love you" every single night, as she settled down for the night in bed. Then, later, when Alzheimer's claimed her, body and soul, those words were uttered more spasmodically, yet they were clearly meant. In the Care Home, during some difficult moments of anxiety and even paranoia, again, those words would come, albeit at times compromised by exhaustion and a lack of ability to speak clearly.

And so, when 'end of life' comes and the loved one, now frail, bed-bound, inanimate, eyes closed and lost to our own world, seemingly beyond communication and our thoughts of what
is to come in the aftermath -- of formality in the funeral service, the 'image' of that loved one now rested in that favourite dress, the yawning chasm, now devoid of all that has gone before, the care, the visits, the hopes and anxieties, the moments of anguish and the moments of genuine joy and all the rest of it, the whole 'dementia journey' - cloud the mind and the heart, it is that very, very special moment which remains intact, indestructible and above all, utterly truthful.

"I love you". And it is those words which herald not hope, not expectation nor wishful thinking, but which embrace everything that has any meaning in life and which can never be touched by the fleeting paraphernalia of modern life. An eternal thing.

When my mother uttered those very words, "I love you" and gazed into my eyes with an almost knowing awareness, even with her dementia, that the end was near, there was an almost sacred moment of communication which was simply beyond expression or words and it was a mutual thing. Therein lies the beauty of it and your lovely post incorporates both reality and what is truly a source of tremendous solace for all those who are moving along this path.

Those three simple words, often so casually expressed, have profound significance here, because they are born out of everlasting truth, which can never, ever die. Therein lies
profound comfort, when everything seems to overwhelm you, like a glorious ray of sunshine which you know will come once again, and always.

 

[Daffy123]

I'm sorry you are going through this very sad time. How wonderful that she managed to say "I love you, I love you" in a strong clear voice."

 

[karaokePete]

I wish you and your family the strength required at this sad time.

 

[PJ]

Sending lots of best wishes & strength to you & your family at this very hard time.

 

[Luckylisa]

Thank you so much to all of you who have sent such kind words. It is so hard sitting in a busy office surrounded by people who have no idea about the sadness and fear I have shoved down deep. It is such a comfort to have this site to keep turning to for support, it makes life bearable. Several times I had to hide and cry, then put a professional face back on and carry on again.

I left work early and went to see Mum, she is so thin now with hollow eyes and tiny pin pricks for pupils. She is restless and has now stopped eating and drinking completely. I know that has to mean we only have a short time now so I just visit every day.

I assume the home will tell us when we need to be there near the end? For now I am still working as I don't get paid if I don't, but it's very hard to stay focused. I worry that she will just go without my being able to get there. I am scared to see her dead body, so if I get that call I'm not sure what to do. When Dad died 7 years ago I felt the same, really not wanting to see his body after he died. Does anyone have similar experience or currently going through the same?

 

[Jezzer]

Thank you so much to all of you who have sent such kind words. It is so hard sitting in a busy office surrounded by people who have no idea about the sadness and fear I have shoved down deep. It is such a comfort to have this site to keep turning to for support, it makes life bearable. Several times I had to hide and cry, then put a professional face back on and carry on again.

I left work early and went to see Mum, she is so thin now with hollow eyes and tiny pin pricks for pupils. She is restless and has now stopped eating and drinking completely. I know that has to mean we only have a short time now so I just visit every day.

I assume the home will tell us when we need to be there near the end? For now I am still working as I don't get paid if I don't, but it's very hard to stay focused. I worry that she will just go without my being able to get there. I am scared to see her dead body, so if I get that call I'm not sure what to do. When Dad died 7 years ago I felt the same, really not wanting to see his body after he died. Does anyone have similar experience or currently going through the same?

Hello Lisa. My own precious mum is shutting down - sleeping constantly, barely taking food and drink, no speech etc. I was told yesterday this could go on for quite a while or something may happen quickly. I do feel for you; it is a hellish place to be. You try and keep going but inside it tears you apart. No wonder you are finding work so hard. Does anyone at work know what's happening? It's an awful lot to bear alone. Yes the home will contact you when the end is near. You are doing wonderfully well visiting each day and your mum will know you are there. You will get through the final moments; somehow we just do. Sending you love and strength and may your dear mum find peace. Take care. Hugs x

 

[marionq]

My first sighting of a dead body was my 80 year old grandmother in 1950 when I was seven. I was told to kiss her in line with the thinking then. My own feelings about death are that it is just another stage in our cycle and that as long as you and her loved ones are alive she will live on. The last thing you want is that all of the good thoughts and memories are wiped out by her last year's of illness.

Find in your memory one lovely thought and make that your image to hang to so you dont forget her true face.

Mine is of granny looking into a mirror which hung near the kitchen sink, long silver hair hanging down while she brushed it, me looking up at her reflection and telling her what lovely hair she had. Because that moment was so strong I can see her face clearly with the sun shining through the window. I am 74 and she was born in 1870 yet she lives on in my memory.

Good wishes at this hard time.

 

[canary]

I assume the home will tell us when we need to be there near the end?

Yes, they are usually pretty accurate about this.
This stage of not eating or drinking at all can go on for some time (in my mums case for 17 days, but its not usually that long), but at the end there are several changes that alert you that the end is near. The main difference is the breathing - at the end the breathing gets long gaps in it, known as Chayne Stokes breathing, and once this starts the end is usually mere hours away. You will find that her limbs go cold and the eyes become milky too. Please dont be afraid of the process, it is a natural process, but seems to have become taboo to talk about, these days. A dead body is not a frightening thing to see. Mum looked much the same in death as she did in life. Mum waited until I was gone before she passed away, but I was holding my MILs hand when she passed and there was nothing to see at the point of transition - she just stopped breathing.

((((hugs)))))
We will hold your virtual hand through this period

 

[lemonjuice]

I assume the home will tell us when we need to be there near the end? For now I am still working as I don't get paid if I don't, but it's very hard to stay focused. I worry that she will just go without my being able to get there. I am scared to see her dead body, so if I get that call I'm not sure what to do. When Dad died 7 years ago I felt the same, really not wanting to see his body after he died. Does anyone have similar experience or currently going through the same?

The Home will probably warn you when the time comes, unless your Mum goes quicker than expected.
However don't worry if you're not there 'at the actual end', many people will tell you they've stayed days waiting by the bedside, sleeping on the floor and exhausted and just popped out to the toilet or to get a drink and found their LO had slipped away during that period.
What I will suggest is that you visit, say your Goodbyes to ensure nothing you want to say to them is left unsaid and tell them the 5 things to say to a dying person
Thank you, for all you've been to me
I love you,
I’m sorry, please forgive me, and I forgive you for any shortcomings we had
and goodbye I'll never forget you.
Then should you miss the 'actual end you will have no regrets.

By the way, if you can't face it, there is no obligation to see the dead body, especially in view of your past experience.

 

[Prudence9]

Wonderful wise words above Lisa, you need to say goodbye in your own way.
lemonjuice has mentioned the most important things to say to your Mum before she goes, if possible and I'm sure the staff at the home will do their best to alert you when the end is close.
Tell her those things and kiss her again and if it's best for you, then leave.
Then remember her as she was when she was happy and healthy.

If you don't want to visit the Chapel of Rest then there's absolutely nothing wrong with that. I always do because it makes it "normal" for me and I like to give my loved one a "once over" to make sure they're properly dressed etc. My sister and brother didn't go to see Mum, they grieve in their way and I in mine, you need to in yours.

Is there anyone at work who you trust that you could talk to?
People can surprise you and do want to help if they can.

Look after yourself as much as you possibly can, this will be taking such a toll on you, even if you can just manage a quiet cuppa to gather your thoughts and maybe a few minutes doze it will help.

All my love to you and your Mum xxx