Bereavement

[jennyms]

Hi!

I browsed some forum postings and thought, "This is a community I would like to be part of."

I took early retirement just over three years ago to support my ailing dad in caring for my mum. Mum has dementia.

My sister and I nursed our dad at home through the last three weeks of his life. He died on Easter Sunday. Now I have moved in with mum and am trying to help her come to terms with the loss of her partner of 60 years. She has no recollection of the last months. She does not remember dad's funeral. She has stopped searching for him and accepts that we say he has died. Yet still she routinely asks where he is, how he is, when we can go and see him etc.

What experience do other members have of loss and bereavement and what advice do you have?

 

[CraigC]

Hi Jenny and Welcome,

Firstly, welcome to our community and so sorry for you loss.

We have a special section for bereavement that I'm sure you will find helpful.

After dementia - dealing with loss
http://forum.alzheimers.org.uk/forumdisplay.php?f=28

If you browse though the above area you will see a lot of stories and experiences that have helped people deal with losing someone or how a partner with dementia may react. I lost my mum over two years ago and took dad (who has alzheimer's) to the funeral. It was a difficult time so really feel for you.

I have moved your post to the above are so you will get more focused replies (hope that is OK).

Kind regards
Craig

p.s. I'll also find some posts that may help with your particular situation and post them in this thread.

 

[Helen33]

Hello Jenny,

Welcome to Talking Point. I hope you will find the support and information that you are looking for. This site is a life-saver to me.

I think it may be worth considering the dementia aspect of your mother's situation rather than the bereavement aspect. I am thinking this because your mother asking where her husband is, how he is and can she go to see him might be something that you can't actually change as it could be part of the dementia! Your mum may very well not be able to retain the information that he has died even though she accepts being told.

I wonder whether it might be worth trying to experiment with 'comforters' of some kind when your mother is wanting this information. She may benefit from some kind of distraction. A cuddly toy can sometimes offer distraction because it uses the sense of touch and occasionally this works so that 'touch' becomes the focus in the mind. I think these things are always worth trying just in case they work.

I am sorry for your loss too Jenny. It sounds like you are having a really tough time and I sincerely hope that you will find Talking Point helpful for yourself

Love

 

[CraigC]

Here is just one post with some advice/experiences.
As I said in my reply to the thread, it does depend on the individual. Hope this helps.

Dad's sister has died - How do I tell him and how will he react
http://forum.alzheimers.org.uk/showthread.php?t=13300


Kind Regards
Craig

 

[Grannie G]

Hello Jenny

My husband asks for his mother every time I visit him. He believes he has written to her and she hasn`t replied.

As far as possible I go along with it, saying `I`ll write too`, `I`m trying to find her`, `I haven`t been able to contact her yet` etc. and it satisfies him to a point.

Another resident and a member of staff thought he was referring to me when he asked for his mother but he isn`t. He knows the difference.

 

[Fenners]

Hi Jenny, so sorry for your loss.

My dad died a year ago, Mum has vascular dementia and alzheimers, at the time seemed to take it on board, but since then its apparent she hasnt accepted his death at all. Me and my family moved in immediately to care for mum.

Over the last couple of months she looks for dad more and more, asks for him all the time, when the phone rings she says "that will be Harry", she thinks he is working up the road and keeps getting her coat on to go and look for him. She continually looks out of the window for him to come, I find it very upsetting to see her so sad, shes gets extremely nasty if we say he has died, its so strange but she actually remembers the funeral but then will say "ah but that was when he was ill - he didnt die she is adament she has seen him every day, to be honest in the end we are all as confused and upset as she is.

I have tried the usual things to distract her and change the subject but have found this doesnt work with this situation, if we "humour" her so to speak by saying "he will be back soon etc.." it makes her worse, so the CPN said we need to just gently remind her that he died. Not easy i can tell you, especially when it triggers off the aggression. Its a nightmare.

i wish i could be of more help - but just wanted you to know you are not alone, TP is so comforting, with such lovely people just to support you - sending you a hug and lots of love xxx

 

[Clive]

Hi Jenny

My mum was not dissimilar to your mum… except that when dad died we had no idea mum had dementia as dad had kept it well hidden.


I would turn up at my parent’s home to help dad, and mum would answer the door and say something like “Dad’s not very well today… you go and talk to him”, and disappear.


At dead on 11 o’clock she would reappear with morning coffee and sit for a few moments saying, “it’s a nice/wet/sunny day etc”. Then would jump up saying, “can’t sit here all day I have to get dinner on”, so nobody ever had a long conversation with mum before dad died.


When dad died mum just became like a very human looking robot… answering questions with believable but standard answers, and not remembering the conversation after only a few minutes. (Anyone meeting her in the street and passing the time off day did not realise there was a problem.) If not occupied with something interesting the checking for keys or money became routine… quickly forgetting she had already checked.


One thing that the family remarked upon was that mum never seemed to miss dad. Sometimes in the early days he came up in conversation … but never in a concerned way and never in the past tense.


We initially put it down to grief… but eventually realised it was something more serious and eventually mum was diagnosed with AD.


Unlike your situation my mum quickly forgot about dad altogether, replacing him in conversations where you would expect to hear his name with her own dad.
Mum would talk about her father as if he was still alive and was the man in her life… wondering when she would see him again… remembering that he had moved round the country to do work etc (though this was in his before mum was born days).


I found there was no advantage for mum in trying to make her behave in the manner I thought was expected of her… that she should remember dad or his death. Neither was it helpful to tell her her own dad was long dead as it just upset and depressed her and put her against me.


I decided that it was most important for mum to enjoy herself (using the term very loosely) as much as was possible. I just played everyday as it came, and allowed mum to be whom she wanted to be… and I played the part that she believed I was…trying to give what she would consider were the correct answers to her questions. No big lies… but little white lies were part of "nursing" her illness.


At the stage in the illness that my mum had reached I found this approach was more beneficial than trying to make mum remember and conform to societies expectations… especially as mum would forget again within a few minutes.


As I have posted previously… I found that pretending to myself that I was not standing in front of mum but in front of a very important customer who I had to keep sweet by agreeing with everything that she said and did to avoid being sacked was helpful. This helped me to take one step back from the son trying to tell mum what to do situation, which I had found both unproductive, and (more) emotionally draining.


Being male I possible found it easier to admit I could not do everything on my own to “nurse” mum’s Alzheimer’s disease and I asked Social Services for help. Whilst in my case this possible was not as successful as it could have been it did set me off arranging both volunteer and professional Carers to give ME time for myself, and eventually lead to me claiming for mum Attendance Allowance and Council Tax DISCOUNT (not Benefit) and Carer’s allowance for myself which helped pay the cost of employing the Carer’s.


Every person with dementia is different and what I experienced may be completely different to how your situation develops… but I found that reading what others experienced helped me find a way that helped both mum and me.


Best wishes

Clive


PS: I wish I could type a little less in my posts.

 

[jennyms]

Thank you!

Thanks to each of you.

Craig - for setting me on the right track;

Helen - mum has taken a liking to some teddy bears; good idea!

Fenners - I think Clive and Sylvia are right to say, "Go with the flow", but there are times when it is really hard, aren't there? The latest trigger for me was when, seeking some explanation for dad's absence, mum decided he has left us to go live with another woman!

Ah well, bless, she has just gone to bed and tomorrow is another day..

 

[NewKid]

HI Jenny, sorry you are having such an upsetting time. Your loss is very recent and you must be very sad and also trying to cope with your Mum's illness. I have been through the same situation and (I hope this encourages you)feel much better now after 16 months. Mum asks where Dad is, looks for him in rooms around the CH she is now in, but I am in a strange way grateful that at least she is not grieving as she does not seem sad just puzzled. I sometimes talk to her in the present tense about what the good things are about Dad, and that helps keep him alive for me. I deal with him not being around by saying he is probably at church. Thinking of you both.