Am I grieving before she has died?

[North daughter]

My mother began suffering from dementia 13 years ago and has been in a care home for 11 years. She is now 97 and no longer talks but remains in bed most of the time, eating and sleeping well. But she does not know me and rarely responds to me. I have visited her every week for 8 years but am finding it increasingly difficult. I am suffering from depression, receiving treatment from my GP, was not sure what triggered it but now thinking it maybe caused by the grief Iam feeling. I know she would not want to be living like this but would be happy to leave this life now. I also know she would be terribly upset to know this is making me unhappy.

She has little wrong physically and I feel she could go on indefinitely. But I am finding it very hard to keep up a positive front as she is just existing but hardly living.

I feel guilty for feeling like this when she is the one who is suffering. Please can anyone suggest ways I can cope and come to terms with the situation. At the moment I am having a break from visiting her as I think this is what has caused my depression.

 

[Izzy]

To begin with I think you have nothing to feel guilty about. To be honest I used to think that about my mum and she didn't suffer as badly as your mum is suffering. I think it would be a good idea for you to have a break from the visiting. Sorry - all of this is easy for me to say but I know not easy for you to do. x

 

[kingmidas1962]

It most definitely is grief - my dad has dementia and my mum's GP described it as a 'long bereavement' because you are grieving for the person you knew and loved, whilst still having to deal with the fact that someone you don't really know is still around.

As well as being treated by your GP are you receiving any talking therapy or counselling? It can be very helpful for unresolved grief (I used to work in a training environment for Counsellors). Its most certainly not right for everyone but it can help to talk it through. There are some great self help groups too. I think if you search on the home page here for services in your area you might find one.

As much as you feel she is suffering it is impossible for us to put ourselves in the place of a dementia sufferer because we cannot know what they are feeling, and it isn't something that anyone ever recovers from, to be able to tell the tale.

Ask your GP about Counselling? It may help. CRUSE are bereavement counsellors but sometimes will help people in other situations, as there are many forms of bereavement and loss (not just when someone has died)

I hope you find the help you need - please let us know?

My mother began suffering from dementia 13 years ago and has been in a care home for 11 years. She is now 97 and no longer talks but remains in bed most of the time, eating and sleeping well. But she does not know me and rarely responds to me. I have visited her every week for 8 years but am finding it increasingly difficult. I am suffering from depression, receiving treatment from my GP, was not sure what triggered it but now thinking it maybe caused by the grief I am feeling. I know she would not want to be living like this but would be happy to leave this life now. I also know she would be terribly upset to know this is making me unhappy.

She has little wrong physically and I feel she could go on indefinitely. But I am finding it very hard to keep up a positive front as she is just existing but hardly living.

I feel guilty for feeling like this when she is the one who is suffering. Please can anyone suggest ways I can cope and come to terms with the situation. At the moment I am having a break from visiting her as I think this is what has caused my depression.

 

[Tooshie]

Hello North Daughter,

I am with Izzy on this one. If you feel that seeing your Mother in this state is making you ill, then ease back on the visits. Only visit on the days when you feel strong enought to cope with what you know you are going to see, therefore don't make your visiting pattern regimental. I told a girlfriend of mine the same thing on Saturday. Her Mother is barely recognising that she is there these days, and has no conversation and it only distresses my friend.

Think of other ways to support and interact with your Mother. What about doing a fundraiser for the home? And is there a Carers/Family Circle you could join or perhaps start one up if not. You've been visiting 8 years now, so I hope you would feel comfortable in instigating this.

A final word though, don't cut back on the visits and then beat yourself up for not visiting.

Tooshie x

 

[Rural Mouse]

Hello North Daughter

I am so sorry you are feeling like this. I can't do much to help either, this is a horrible time for you but is there anyone at the home you can talk to? A church you, or your mother used to, attend? Carer groups in your area? Family to give you a big hug. Anyone to give you a big hug?
I am hesitant to say this but.. a friend of mine finally gave her father 'permission' to go after a long and good life, but a last dragged out illness. It seemed to help her, although I am ashamed to say I did not understand at the time, I believe I do now.
Bless you
RM

 

[MinnieMouse]

My mother began suffering from dementia 13 years ago and has been in a care home for 11 years. She is now 97 and no longer talks but remains in bed most of the time, eating and sleeping well. But she does not know me and rarely responds to me. I have visited her every week for 8 years but am finding it increasingly difficult. I am suffering from depression, receiving treatment from my GP, was not sure what triggered it but now thinking it maybe caused by the grief Iam feeling. I know she would not want to be living like this but would be happy to leave this life now. I also know she would be terribly upset to know this is making me unhappy.

She has little wrong physically and I feel she could go on indefinitely. But I am finding it very hard to keep up a positive front as she is just existing but hardly living.

I feel guilty for feeling like this when she is the one who is suffering. Please can anyone suggest ways I can cope and come to terms with the situation. At the moment I am having a break from visiting her as I think this is what has caused my depression.

Hi

I am sorry to hear that you are feeling so depressed. My Mum also has dementia, she isn't at the severe stages yet but I do understand. I find what has helped me through this and also when I lost another close family member recently is the gym or any sort of exercise will help you burn off some of your depression, honestly, give it a try and I promise you it will help. I also can hear how guilty you feel, and I know I will be very similar if my Mum gets to the same stage as your Mum, but if your Mum does not know you, and also your Mum as she was would certainly not want you for one minute to go every week and see her that way and feel depressed, then why don't you promise yourself to go only for occasions like birthdays and Christmas, etc, one of my friends does this as this helps her to cope. When I feel down I always think if someone else was in my situation, what advice I would give, and I bet you would tell your friends not to go all the time and try to enjoy their life, as their Mum would want them to. I hope that you can find some peace and happiness and I am sending you a big hug, lots of love xxxxxxx

 

[ceris]

Hi North Daughter. Yes, you are grieving. You're grieving for who your mum was, you're grieving for happier times that have passed, you're grieving for happy times that won't come again. You're grieving for you too. Grieving's not just about death, it's about all sorts of losses, and those of us who care for people with Alzheimer's in whatever capacity are grieving to greater or lesser degrees. I grieved for my mother long before she died, and I'm now grieving for the ongoing loss of my dad. I too have had and have recently been on the brink of clinical depression. I think that many of us have, here.

I'd like to add my encouragement to do some exercise if you can - you will feel better, as if you've achieved something (which you will have!). Listen to music. Write out all your pain (writing therapy is very powerful). If you haven't had counselling, ask your GP to refer you. If your meds aren't working (you don't say whether your treatment's helping or not) , maybe ask to try new ones. And yes - if the visits are upsetting you so much, then maybe cut them down and don't feel guilty (hard though it is).

You say your mum is suffering - as someone pointed out, we don't know what goes on in the mind of someone affected by dementia. But remember - you do know what's going on in your mind. And you are suffering too. Please be compassionate to yourself, and please take care of yourself.

Ceris *hugs*

 

[Night-owl]

good advice

Hi north daughter,

Reading the replies above, I think they all contain excellent advice. I agree that you are grieving for the mother you once had, and also for the life that she has in fact lost. My mother is 99, 100 in 2 months time, and has vasc. d. She has only had it for 4 years, and entered a home in Nov. She has quite a bit more capacity than your mum, but I have had to give myself permision to grieve as I realize I am losing her bit by bit. Another thing that we grieve for, I think, is the ability we once had to make things better for them. There's a drive in most of us, I think, to try and make our elderly parents happy, and we feel a failiure when we can no longer do it, or be sure we can do it.
An alternative or add-on to a gym might be singing. It does wonders for many people, and there are a lot more community choirs out there now. Writing or painting are sometimes helpful too.
Depending on how close the home is, could you try popping in very briefly with a plant or flowers or a few sweeties, and only staying 10 mins. max? Would she enjoy having music played to her, or a simple story read to her, or a poem? or a hand massage?Maybe she would show no outward sign of enjoyment, but as said above, we don't know what it's like inside their head. Also,your mum might not be consciously suffering, just unable to indicate what's going on. I say this only to give a reason for you to not suffer for her...if that makes sense.
Most important is that you don't feel guilty, allow yourself to grieve and look after yourself. That's what a loving mother would say to you I'm sure.
Love, Night-owl

 

[jude50]

My Mum died just three weeks ago and I too feel that I did a lot of my grieving before she went. I grieved for the lost times, laughs and conversations, I grieved for the lost me as I turned into carer and nursemaid rather than daughter and now I don't know what I feel, sort of empty. I am also having treatment for depression through the stress of caring so I can sympathise with you and the utter despair of the situation that you are feeling. To help me i can carried on in my art class, sometimes I created a right ness but sometimes through all of it out came a painting that I thought yes that I am proud of. Try something that relaxes you and is completely ubrelated to your caring role. I didn't think my mother was really aware of what was happening to her at the end, she never showed any distress and she was smiling right up to the day before she died. If you feel you need a break from caring take a break but don't feel guilty for it, your Mum would understand.

Jude

 

[meme]

Hi North Daughter...as has been said you are grieving..you are in a kind of limbo, you have lost your mother but she is still there ...you do not need to be positive when you are feeling the opposite, counselling be it bereavement or just finding a counsellor would be a perfect place for you to just take a deep breath and let it all go each week for a while.

 

[flowerpot]

Hi North Daughter, you are grieving, it's all so difficult. My FiL was sectioned last September and then moved into a CH. (He has Alzeimer's) We have found it very difficult to come to terms with and haven't been able to visit very often. We feel terribly guilty about it all as he had lived here with us with MiL who is still here with us. She gets very upset when we take her to visit. She has Vascular Dementia and forgets that he doesn't know who she is. We try to explain to her before we visit but it doesn't always work. She tries to make conversation with him and he hasn't a clue what she's talking about which upsets her and its just a horrible vicious circle.

I haven't got any advice apart from what has already been said but you need to look after yourself though and try not to feel too guilty if you don't visit. Much easier said than done I know.

Thinking of you and take care x

 

[North daughter]

Grieving

Thank you to everyone who has replied to my post of yesterday. I have taken something different from every reply which is so helpful. It's true that this can be very difficult for people to understand if they have not experienced it personally. And similarly with depression whatever the cause.

I have not had a good day today but I am taking that a sign that I am accepting the cause of my depression and acknowledging that I can stop trying to be brave about all this. After I got up this a.m. I felt despairing and full of sadness and in the middle of a good cry(my first over this situation) the phone rang. A friend invited me round for lunch and we had a good talk. It always helps to share troubles. I felt exhausted afterwards and went to bed for the afternoon! So I am trying to listen to my body.

I feel much better about my decision not to visit my mother for awhile now I have had reassurance from so many people.

 

[MinnieMouse]

Thank you to everyone who has replied to my post of yesterday. I have taken something different from every reply which is so helpful. It's true that this can be very difficult for people to understand if they have not experienced it personally. And similarly with depression whatever the cause.

I have not had a good day today but I am taking that a sign that I am accepting the cause of my depression and acknowledging that I can stop trying to be brave about all this. After I got up this a.m. I felt despairing and full of sadness and in the middle of a good cry(my first over this situation) the phone rang. A friend invited me round for lunch and we had a good talk. It always helps to share troubles. I felt exhausted afterwards and went to bed for the afternoon! So I am trying to listen to my body.

I feel much better about my decision not to visit my mother for awhile now I have had reassurance from so many people.

If you need to cry you should have a good cry, sounds like you have bottled an awful lot up. I am glad you feel better about your decision. No wonder you feel depressed with what you are going through and good on you for having a sleep and listening to your body, I sleep loads when I am sad, that is another way I cope when things are really tough. I know it doesn't seem it at this moment in time, but going from past experiences, time is a great healer, and you are going through all the emotions now and grieving, some people don't face their emotions and then it comes back to bite them later on. Just take each day as it comes, and don't be too hard on yourself, we are all always here for you, good night hun xxxx

 

[Big Effort]

Dementia, Grieving and Depression

Dear North Daughter,

At the moment I am having a break from visiting her as I think this is what has caused my depression.

I read your post..... being a carer of a mother with Alzheimers (just 3 years of being fully in charge)...... I can identify with so much of what you say.

First I think you should really take stock of what a long time you have been caught in this dementia zone, betwixt life and slow, slow, slow death. This is hugely stressful for those of us who care, as the emotional aspect is very wearing on mental and physical health. You are amazing. No doubt. Absolutely amazing. Stamina the likes of which there is no parallel in 'real life'. So no wonder it becomes wearing, disheartening, and painful, after all those long years you have put in. Give yourself a pat on the back every time you see your face in the mirror, and a gold medal every time you get dressed.

I am reading a book that I think will clear up a lot of your thoughts, feelings, guilt and so on. I am so impressed with it that I think it should be made a part of the national teaching curriculum - this is mental health information we all need.

The title of the book is "Learned Optimism: How to change your mind and your life" by Martin Seligman. I have a background in psychology, have suffered situation-induced depression (like yours), and this is worth its weight in gold. [By the way I have no interests in selling the book, this is a genuine recommendation for those of us where the toll of caring is long and hard and unpredictable.]

It isn't a book about optimism, rather it looks at the ways people who secumb to depression, helplessness, and perhaps even dispair at our situation ever changing for the better, how these people reason about their circumstances. What I like is there are depression tests to see how depressed you are, and it is an immediate take charge of improving your life book.

What is encouraging is it will explain to you why you feel like you do. This has been a long, long stint, North Daughter, and I, for one, am using the book to chart my way to pleasant, vibrant, out-of-survival and into real living mode.

I do so hope you feel better soon. I am now looking for work (but only jobs I want/like as I have had enough of taking the hard route), I find making decisions much easier, I can be gentle with me because I understand me and my reactions, and I know how to get from A to B.

With love and lots of fellow-feeling, BE

 

[North daughter]

2 weeks later

It's nearly 2 weeks since I made my first post on this forum. At the time I felt desperate. I was overwhelmed with grief about my mother and the changes in her over such a long time. It feels so unfair that she is having to suffer this state for so many years. It was very reassuring to read everyone's messages and it helped me to realise that what I was feeling is normal.

Over the last 2 weeks I have been coming to terms with the fact that although it is awful for me to see her like this it probably isn't awful for her as she is unaware and existing in her own world. I am still feeling very depressed and after a month on medication I don't see any improvement but am seeing Dr. tomorrow. I have told the Nursing Home I won't be visiting for time being and explained why. I think I have become abit calmer about her situation and feel I can accept it more.

Not sure why I am writing all this but it does seem to help to share my feelings and thoughts.

 

[Izzy]

I'm glad it helps to share your feelings and thoughts. I hope things go well with your doctor's appointment. x

 

[kingmidas1962]

keep the posts coming to let us know how you got on. It is, and will be a long haul - but we're all in this for the long run and you'll get there. With support from your GP, and your friends (and us!) you'll get through this

I still find it easier to think that we shouldn't assume that all Alzheimers/dementia patients are suffering just because that's how it appears to us - we cannot exist in their world, so we simply can't assume that's true.

I was so glad to hear hope in your latest post - hang on to that hope and it will take you home

xxxxx

 

[rajahh]

My mother was similar to your mother except that my mother was just 68 when she finally died.

I used to visit and to be honest my mother would not have blinked if I had gone to the person sitting next to her and visited her instead.

My mother did not speak, did not acknowledge any family, and I used to sit there holding her hand crying.

My mother never reacted to me tears either.

I do not personally feel your mother is " suffering" at all. I believe it is us who suffer.

My mother finally succombed to untreated pneumonia, and I for one was grateful . It was very peaceful and she never showed any signs of distress.

I grieved for her during the 7 years she was ill, but to be honest I only cried once after she died.

Jeannette

 

[Canadian Joanne]

North Daughter,
I am very much in the same position you are. My mother was diagnosed 11 1/2 years ago at the age of 64. She went into a retirement home here at that time and 2 years later went into a nursing home.

She has been wheelchair-bound, doubly incontinent, unable to feed herself and with very little speech for the last 6 years. She is now down to an occasional word. She had a very drastic and sudden decline 6 years ago but her decline has been very gradual and subtle for the last 3 or 4 years.

She doesn't know who I am and hasn't for years although the staff feels that she recognizes my face and is more animated when I visit. I'm grateful for their saying this, although I suspect they are being kind.

I now usually visit once a week, sometimes twice, as we find it almost impossible to visit during the week due to our work schedules. So it's the weekends for us.

In the past, I found visiting very stressful when my mother was articulate and horrible. I would take breaks at that time and they were very much needed.

I think yes, you are grieving now. I look at my mother now and I don't see my mother, I see the pitiful shell of was once a beautiful, intelligent, proud, reserved and more than slightly stubborn woman. I used to cry a great deal but now tears rarely come. I expect that I will grieve when she finally dies but a part of my grieving is behind me.

A business colleague's father died of Alzheimer's. He told me that some people asked why he didn't cry when his father died. He told them he cried for 3 years. There were no tears left when his father died as he had already grieved so much.

My mother seems much more content now than years ago. She laughs and smiles and eats like a shark. It's all I can ask for.