How to deal with dads funeral - mum has alzheimers?

[michaelOC]

My father passed away on Thursday after a 14 week stay in hospital. My mother has advanced alzheimers and has over the weeks believed it was her dad in hospital (he died 45 years ago). My sister and I told her of our fathers death but again she thought it was her dad. We then made her understand it was her husband and of course she broke down but 10 minutes later she had forgotten. The nurses said they found her very upset the following morning but she didn't know why and they didn't remind her (on advice from the senior nurse).

Now we need advice on how to handle the funeral. It will be a reqium mass followed by a burial. We feel we must take our mother to the funeral but would the graveside be too distressing for her. If she still believes she is burying her father should we let her think that or remind her that it is her husband?

From a few days after my dads accident (he fell down the stairs) she has thought we were visiting her dad in hospital, it was almost as though she had wiped dad from her memory. She seems to have gone back to a time before she even met my dad. Only twice in 14 weeks has she refered to the house she lived at with my dad at the time of the accident and then she seems to think she lives there with her mum and dad.

She has got very much worse since my fathers accident so we are concerned that the funeral will make her even worse.

Advice please. Has anyone else had to cope with this situation and how did it go?

 

[jenniferpa]

Dear MichaelOC - welcome to TP

I don't have any experience of this I'm afraid, but sadly there are a fair number of memebers who have had to go through this, so hopefully they'll be along to give you their opinions.

Just a couple of things I wanted to say.

The regression (thinking your spouse is your father, your daughter your sister etc) is very very common, together with the confusion about which house is home, as you may be aware. Many (perhaps most) dementia sufferers seem to come "unstuck in time" at some point. They believe themselves to be much, much younger than they are, so when they see a spouse for example, wearing an "older" face they assume it must be a parent. I think much of it is a yearning to be back in a place where they felt not only safe, but also when they weren't expected to make decisions for themselves, which accurately reflects their current ability.

Secondly, and I should preface these remarks with an advance apology, because I really do not wish to distress you at this difficult time, but simply offer them as food for thought. WHY does your mother have to go to the funeral? I understand that people might feel it's a bit odd if she's not there, and you might feel that she should be there, but is it actually going to do her any good? Funerals form part of our societies grieving pattern, but as much as anything, they are for people to draw a line, as it were. For someone who is confused, who has already, from what you say, forgotten much of her married life, is it really going to serve any useful purpose? Wuuld it not be worth considering if this is one time AD can work to your (and your mother's advantage) and allow her to avoid the grieving? It is not as if, forgive me, she will at some point improve and be distraught that she did not mark your father's death.

As I said, someone will be along in a while, I'm sure, to offer you some more opinions. I'm sure there will be a wide range of views on this.

Jennifer

 

[DeborahBlythe]

Hello, I'm writing to back up what Jennifer has written. The following thoughts are posted on another thread,( 'Why does the happy never last', started by Blue Gremlin') so apologies for recycling them here, but they are still relevant.

We didn't tell our mum about her brother dying. She had been asking about all kinds of members of the family, especially my late dad, and her very late mother in law who died 50 years ago. Each time I was completely floored, because telling her the truth just reduced her to great distress, guilt that she had missed the funeral, couldn't REMEMBER it, what had he died of? What a remiss wife and daughter in law she must be, what sorrow that her husband would never return.. .

OK, I know people with AD have a right to grieve as much as anyone else, but who is there to help pick up the pieces? Not the care staff in the homes, because they don't have time, and not me either because I can't be there 24/7.

She would get into a cycle of asking about my dad, sometimes ten or fifteen times in an afternoon and the truth just made her bereaved all over again, fifteen times. I eventually had to work out a way to change the subject somehow without actualy answering the question. I wrestled with the question about her right to know about her brother, but on balance I felt that she would be upset too much, might keep getting upset if she DID retain the information, and the deciding factor was that she wasn't actually asking about her brother anyway. He had passed out of her life before he died. She never asked about his health nor wanted contact, so it seemed pointless to tell her about his death. My (tough) decision was that if she ever asked about him, I would tell her the truth, but she never has asked. I take the same tough line about the news of her friends dying. Maybe this is all wrong, but if it prevents her unnecessary grief, then I'm sorry but the pragmatic is kinder than truthfulness, I think. However, everyone must make up their own minds and everyone's circumstances may be different. I am a huge believer in human rights, and maybe my mother has a human right to know about her brother's death. In her case,on balance, I think kindness is more important.

I hope this is helpful, and send you sincere sympathy.

Deborah

 

[alex]

Hi Michael

I'm sorry i have no experience of your situation, just wanted to welcome you to TP and say that i agree with Jennifer and Deborah............if i was in your position, i would not take mum to the funeral, although it might be expected, i'm sure family and friends would understand that she would not be up to it, i don't think i would want to cause more heartache than is necessary.

Good luck with the funeral and best wishes for the future.

Love Alex x

 

[Áine]

Dear Michael

My sympathies about the loss of your dad. Sorry you're in this difficult and painful position.

I had something a little similar when my uncle died last year. Dad had dementia (he's since died too) and was pretty much confused most of the time (with a few remarkably lucid moments). Care staff didn't want me to tell him about his brother, but I did. That was one of his sudden lucid moments - he remembered Peter had been ill and kind of said he was upset but not surprised. He was upset next day, like you said about mum, but didn't say anything and I didn't remind him. Dad's CPN (who I had a lot of time for) had suggested it was right to tell someone once, and let them grieve, but telling them again and having them grieve all over again like it was the first time they'd heard the news just wasn't fair. I don't know what he remembered - but he always used to greet my cousin with "hello, how's your dad?" .... from that time he never said that again.

I wanted to take dad to the funeral. My cousin was keen for him to be there and be included, though some other family were concerned that he might disrupt proceedings and make the occasion harder for other people. I thought we'd go and sit at the back, and hopefully I'd be able to get him out quickly if he was causing a disturbance. On the day though, he was very confused, and attacking the staff who wanted to put him in the bath and get him ready.

We still went, but only to the after funeral "bun fight". In the end I think that was a reasonable compromise. He was still included as part of the family. I don't think he understood why we were there or what we were doing, but he's always loved a chance to see his family (a 70 mile journey away - so not something we did every week).

What's different between that and your situation is that although I was fond of my uncle, I didn't know him that well and it wasn't a loss like losing a parent is a loss. You're naturally concerned about how best to manage things for your mother ........ but it's also really really important that you think about you ..... and what's best for you and what you need to do. It's a day you'll remember for a long time, but your mum won't. I suggest you think about what's right for you, and then think how mum fits into that.

take care

Áine

 

[Margarita]

I am also sorry about your father passing .

I would just like to add what I have learn read about dementia / AZ. I cannot find the book at this moment, so shall write what I remember.

When you said it was almost as though she had wiped dad from her memory. She seems to have gone back to a time before she even met my dad.

In a way yes it has , it could be the shock of it all , because the disease is rolling back the memory and the shock could of rolled it back more , think of her long team memory as a diary with all her life writing in it, as the disease take hold its wiping out the written letter on the page of he daily its all rolling back.

Its not that your mother wants to forget your father or is in denial , as I am sure you must know that .

its just the diary of those days our just not there they have been roll back , when she has a day of enlightenment and she remembers, those brain never just may connect for a while bring back those pages of her daily of your father.


I don’t know , understanding what I understand about dementia , Am not saying that you could remind her of it .
yes your mum would feel upset when she remembers , who could blame her we all feel grief, so the nurse found her upset , that’s her job to comfort her when she remember or gets upset ,then she forget i(f you do not mind me saying) your mother the lucky one in not remembering . If you have the courage and want to take your mother,

saying its If she still believes she is burying her father should we let her think that or remind her that it is her husband?

Do so


, but as you said that since your father death she has got worse , thinking about it , it may roll back the disease more as she sound like she in the later stages with the shock of your father , I know when my father died , my mother was in the early days of AZ , when he died she went in to the middle stages so fast , that only medication stop it going full Blown.

Hard choice , let us know what you Deeside (((hugs)))

 

[suze]

Non recognition of people

I really feel for people who have already had to go through the situation of a funeral of one parent with the other having Alzheimer's and am grateful to read what has been written by those who have expereince. This situation will be mine before too long.

I think my mother is now well into moderate stage - though only offficially diagnosed in August and on Reminyl - and my 81 year old Dad cares for her - though he has fragile health. Mum often refers to Dad as 'the other one' or talks to me about 'the two Dads' and sometimes I beleive she does think her husband is her father. It must be heartbreaking for the partner left....

It fair breaks my heart to watch it. I have tried wedding photos etc, but it doesn#'t seem to help...

Suxe

 

[Lonestray]

Hi Michael from what you say, your Mum thinks your Dad is her Dad, Then your Dad must have been a very special person. When my wife was able to walk and talk she kept setting out for home where she lived 50 years ago. Also she was late for school, I always went along with where she was, offering to take her 'home' telling her I'd have a word with the Head.
Now I'm not sure who my thinks thinks I am, but I'm not worried so long as she knows I'm here for her. Yesterday I told her ' I'm your servant, your my boss, you know that'. To my complete surprise she replied "Yes" Day after day I seek a Yes or No or even a nod, but to no avail.
Most Alz suffers seek the warm comfort of childhood and the company of the one they shared the deepest love and security. No point in trying to explain to her. I know my wife loved her G'Dad I never knew him, but if she thinks I'm he, that's great. I can't begin imagine, nor will I ever, what it must be like to lose a parent.
I offer my condolences to you and your family and in time may you cherish the qualities he left you.
As for the funeral, you know your Mum, she will sense if your upset, try to relax and go with the flow. God bless. Padraig

 

[Dave W]

A tricky situation

I can't empathise, as my Dad died a number of years ago, but I can sympathise. Since my Mum has been in hospital or a home, a close friend of hers and her sister-in-law have both died. As she'd never mentioned either of them or asked after them, and has occasionally asked after her own parents and if they're still alive (they've been dead for 25 years), I too have taken the line of not mentioning it. She is convinced she was married to her father, and my own father seems to have vaporised from her memories altogether lately. Where I in the same situation, I suspect I would not take her to the funeral, partly because of the risk of upsetting her, partly because your father's funeral is a tough enough situation without having to worry about your Mother, partly because it's debatable how much she would acknowledge or understand what was happening. I can see the argument that she has a right to be told, but I would say she also has a right to be subjected to minimal distress, upset and upheaval. A funeral is also a fairly lengthy occasion, and I know that my own Mum can no longer really take anything in if it lasts more than about 20 minutes. (I think Aine made a very good point here, personally).

But I appreciate it's a very hard decision for you to make - just don't treat it as an opportunity to beat yourself up. You probably have enough of those already, and you don't need another one right now. Let us know what you decide.

Dave

 

[noelphobic]

My mother was actually the only person present when my father died suddenly at home. When my sister called in and asked why my mum hadn't told someone she said it was because 'I didn't want to bother anyone'!

My mum did come to my dad's funeral. She was distressed but not abnormally so, and you are allowed to be distressed at funerals! However, that was 2 years ago and her condition has deteriorated since. She said to me yesterday 'I haven't seen your father for ages'. I very much doubt that I would take her to a funeral now, but at the time it was the right thing to do.

If you decide to take your mum to the mass is it possible for someone to be there to look after her if you decide it is best not to take her to the burial? At least that way if she finds the service too much she doesn't have to go the grave. Even if someone just waited in the church with her until the burial was over. I assume that the closest family members would want to go the graveside so if there is someone who will be there but not quite as close then maybe you could ask them now? Then if you do think she's up to going to the burial you can go ahead.

I hope whatever decision you make works out for the best.

 

[Tender Face]

I’m sorry if this is upsetting… but I feel there is another person’s perspective to be considered here…. …. and that’s your dad’s…….

Experienced taking my mum to the funeral of one of my parents’ longest standing family friends this year - and it was difficult ….. her behaviour was not quite decorous for such an event …. (but with ‘prior warning’ all the family of the deceased recognised it might be the case, agreed it was right she was there and so I arranged it that mum and I sat discreetly towards the back of church and were able to make a ‘swift exit’ should the need arise….. which fortunately didn’t with much effort and diversion…..)

Mum had no understanding of the occasion (limited it to the church service not the burial nor the ‘wake‘) but what I gained from the family later was how pleased they were that we had ‘done it’….. even if mum could not fully understand why she was amongst so many people whose faces seemed ‘vaguely familiar’ … nor why ……

I feel privileged that my own dad’s funeral some years back was a great affair of remembrance and celebration from so many who loved and respected him, - but I know too, it was only the great loves of his life mattered to him ….. mum was his first and most enduring love….. (me a poor but grateful second) ….. if it meant only she were there … that’s how it would have to be…… however mum was…. I feel I’d ‘owe’ it to my dad to make sure they were somehow ‘together’ at that time….

I’ve learnt myself to subscribe to, and then regret, the ‘mum will forget’ doctrine …

Just my thoughts… and sorry if it helps none…..

So sorry for your loss ..... and the pain of the pressure just now of 'trying to get things right' - when there is no right or wrong ..... just the best we can do.....

Love, Karen, x

 

[BillieJay]

Dear Michael,

My sympathies to you and the family at this awful time.

My Mum has Alzheimer's, though in the fairly early stages, and my Dad is her carer. And although I haven't been in your position, I can envisage a time when I might be. So what follows is entirely theorising on my part (ie feel free to disregard it completely if you wish).

The emphasis of your post is on your Mother - understandably so, given the nature of TP. But please don't forget that the funeral isn't just for your Mother's husband, it is also for your Dad. Funerals are a rite of passage allowing the living to mourn, grieve and remember, but are too a small step on the way to acceptance and moving on. You need that opportunity to grieve for your father. If you took your Mum, would you be so preoccupied with her that that opportunity passed you by in a blur, and afterwards you would feel that you hadn't said goodbye?

I agree with Jennifer, does your Mum really have to be there? Just as a purely personal opinion, I think I would choose not to have Mum attend the funeral. And perhaps when you're feeling stronger, you could have a small, informal remembrance, with your Mother and very close family, so that even if she didn't understand, she would have had the chance to say her own goodbyes?

Whatever you choose to do, my thoughts and prayers are with you.

BJx

 

[Carolann]

Hi,
I experienced this problem in March this year. My Mum had been in her Care Home for only one month when my Dad died. We visited Mum at her Care Home on the day that Dad died and we explained to her what had happened and she cried - the next day she said she felt very upset but did not know why she was upset - she had forgotten that Dad had died. My sister and I decided that it would be better for her if she did not go to the funeral as we did not want her to get distressed and we thought it may be too much for her, and if I am being honest perhaps too much for us as well - dealing with Mum and the funeral. We mentioned this to Mums Social Worker and she said she thought we should take her to the funeral, her words were " Who has the right to stop a wife going to her husbands funeral ". This made us think again and we decided to take her, and I am glad that we did because a few weeks later when she asked why Dad was not visiting her - and it was not one of those times where I could change the subject - I told her Dad had died. Mum accused us of not taking her to the funeral and said it was disgusting that we had not told her, I could tell her in all honesty that she did go to the funeral and I said to her that she probably could not remember because she had been upset. Infact mum was not upset at the funeral, just very quiet, stroking the photograph of Dad's face on the Order of Service.

To be honest Mum enjoyed the 'party' as she called it after the funeral as she saw many relatives and friends and everyone was making a fuss of her.

I am pleased that we decided to take her, but I do know it would not be right for everyone, and that every case is different, I just wanted to share my experience.

Mum died on October 21st so I am not looking forward to Christmas, the first Christmas in 55 years without Mum and Dad!

Take Care and whatever you decide to do will be right for you and yours.
Carol