What Do We Do Now???!?!??!!?

[SkyHigh]

Hi All,

I have been a user of TP for about 3 months now, but regret have not had a chance to log on properly for a number of weeks. Our story is that my mother in law was diagnosed with Az in November of last year, and was cared for primarily by my father in law, who was suffering from Prostrate cancer. A month ago, he was rushed into hospital so we have been sharing caring with mum, with her 2nd son. It's been tough. Sadly, my father in law passed away earlier this week, with his final words being Is Mum Ok?

We have had a wealth of support from the Notts Alzheimers Society, but are still at a loss where to go from here. The funeral is on Tuesday, and Mum in her moments of lucidity knows what is going on. She was aware that he was very ill, and was certainly shocked when we had to sit her down on Monday morning and tell her that Dad had passed away. How do we get her through the funeral? It would almost be a blessing if she hadn't had a "suitable reaction". Perhaps that would have been easier.

We are struggling to find a suitable network of carers - way too soon to have a live in carer move in (something that we had promised Dad we would do) - FYI, we live a way away, as does son No 2 and whilst we are more than happy to do what we can, we see a great struggle ahead. Currently, she is (in our humble opinion), not ill enough for residential care. Dad's definate wish was that she stay at home as long as she is happy and safe, and we do appreciate that our decision for her to do exactly that, may well have to be re-assessed as time goes by.

even so - any advice would be appreciated and gratefully received.

Many Thanks,
SkyHigh

 

[Blue_Gremlin]

SkyHigh,

First I just want to give you a big *hug* and say I am very sorry for your loss. I am soon to be in a similar situation as my husband's grandmother (Jean) who has dementia and we care for has a sister who is terminally ill. I am dreading tell her that she has died as she too has her lucid days.

I also know what you mean about a lack of carers network. Jean was closest to her sisters geographically speaking as we live 20 miles away. But with one sister now in a nursing home terminally ill and the other not being able to cope and looking to move away we are faced with a crumbling care network and a decision needing to be made. She is getting to the stage of being a danger to herself when left alone and for that reason and that she has become and is becoming more isolated and lonely we are looking to get her into a home near us. We would then be able to visit more often and take her out for days to our house and to the sea as we live in a seaside resort which I think she would like - kind of like an extended holiday.

Non of this is ever easy but I am a firm believer in 'what doesn't kill you makes you stronger' and if I wasn't I would have fallen apart long ago. The people on here help me to keep my perspective when the guilt monster attacks and help me see that all I ever do is in Jean's best interest - even if she can't understand that.

I hope this site and the people here give you the strength to get through this.

Sorry I have not been much practical help though

*hug*

Blue_Gremlin

 

[Amy]

Hiya SkyHigh,
Sorry about your father-in-law's death. Is MIL going to the funeral? All you can do is take it as it comes - she may not be aware of what is going on.
What is your MIL's condition? Can she still dress herself? What about meals? On her own, how do you think she will deal with the isolation? Does mum have a social worker ora CPN - the GP will help arrange these. How far away are you and your brother in law?
No doubt there are difficult times ahead, difficult decisions to be made, do use TP as a sounding board to help you work through some of the decisions.
Best wishes.
Love Helen

 

[SkyHigh]

Wow! Always overwhelmed by this website!

Firstly, MIL is going to the funeral. She is well aware that he has passed away (I think). Her absence would almost be worst than the event itself. It has been surprisingly enlightening (possibly too strong a word ), how lucid she can be. I'm not saying that she isn't poorly - she clearly is. Perhaps it's careful acting on her part, but I very much doubt it. I have known her for 7 years, and whilst I am pretty sure she has been ill for at least 4 years, she has always been a very kind and calm lady, epitomising gentleness. We're hoping that only this aspect of her personality would be accentuated with any worsening in her condition. Optomistic possibly, but hopeful all the same.

She can certainly still dress herself -allbeit rather samey (Since Dad was taken into hospital I have (rather proudly) perfected the art of getting her to change her clothes by suggesting - why don't we wash those clothes Kath - they're obviouslky your faves, and it looks like you've spilt something on them!). She is still OK with bathing and such like. With her only having 2 boys, I have rather willingly, taken my role in the care plan as being the girly figure that saves the boys doing the rather embarrasing job (for them), of suggesting what clothes to wear, or whether a nice hot bath would help etc etc. Frankly, they have trouble co-ordinating their own attire so I'm sure co-ordinating that of their mums would be WAY too much for them .

We don't feel resentful, but I think there is an element in all three of us, that wishes we didn't have to be doing this - not least because, in her hay day, she'd have hated being told what to wear etc, but more, because ALL THIS, whilst we are still so raw with the loss of Dad.

My partner (Jason - son No 1), asked a very obvious question of me earlier this evening - has Mum got anything to wear for the funeral - I don't know if she has - anything Black that is. But does she really need to wear black? it was their 40th wedding anniversary earlier this year and despite her illness (or should I say because of her illness), when dad took her shopping for an outfit, she quite fabulously decided on an almost exact replica of the beautiful pink tweed suit that she had worn on her wedding day. Perhaps she should wear that. I mean, lets face it, we don't care what people think. Whether she wears black or not I mean>.... I know, I'm rambling sorry.

I echo the views of the three of us, when I say - I DON@T KNOW WHAT TO THINK OR DO!!!!!!!!!!!!!!!!!!!!!!!!

I suppose I'm not really after any advice (or am I) - more a e-shoulder to lean on and tell us that it will be ok - people do tell me I'm always asking the impossible!

keep the replies coming - they are a true comfort

Thank you

SkyHigh

 

[Helena]

I went to a friends funeral recently and before he died he told his wife "No one especially you is to wear black at my funeral"

She wore blue and their daughter wore white and blue

Most of the others at the packed church wore blue or grey or beige

I do not see anything wrong in your MIL wearing pink if it reminds her of her husband

 

[connie]

Please, please let her wear whatever outfit she wants to on the day of the funeral.

She is burying her beloved husband, this is about the two of them, and DOES BLACK MATTER. If it doesn't to her, so be it.

Our thoughts are with her, you, and the rest of the family. Trust it all works out O.K.

 

[jarnee]

Sorry to hear of your loss.

I agree with Connie, your MIL should wear what she wants and I think it is especially fitting to wear the pink as it is the last outfit he bought her and reminds you all of their wedding and, thus, of their lives together.

As for what to do next......not so sure about that. I was in a simikar situation earlier this year....mum died, dad has AD, I'm an only child and live miiiiiles away. But it was different cos dad is much worse that your MIL, by the sounds of it and he HAD to go into care (Doesn't know who I am and thinks I'm pulling his leg when I tell him he was married !!)...and it as all made worse by the recent bereavement isn't it.

Go with your instinct, is the best I can offer. Make sure she is happy and you all will be too. Sorry I can't be much more use, but I will be thinking of you.

Jarnee
XXXXXXX

 

[Lila13]

My mother wore blue for my father's funeral and was the life and soul of the party.

There were only two of us in black at my mother's funeral.

Lila

 

[maria29al]

Hi,
At my Dads funeral a few weeks ago we all wore something bright...it was a lovely sight. Even his bamboo coffin had huge sunflowers swagged around it.

I am sorry that you are going through such a tough time. Big hug to you and yours.

Take care.
M
x

 

[Kath TN]

So sorry to hear of your loss. My mum died last September after a long illness that dad seemed to be aware of, mum had been in hospital all of August and was readmitted mid September. When we told Dad that Mum had died he was very upset but appeared to cope well until the night before the funeral. On that night he insisted on visiting the funeral parlour to see mum before the burial - we had our reservations about taking him but in the end thought it might be the 'final closure' that he needed. On seeing Mum he insisted that it wasn't her, it was a lady with fat legs (mum was just about five stone when she died and had bypass surgery on an artery in her leg - leaving her with swollen legs). We talked to dad about the surgery and her swollen legs and he accepted it, the following day he attended the funeral and coped really well - getting upset at the relevant points and chatting to old friends, family and neighbours in a cohesive way - we all thought that he was doing really well.

Here's the hard part - brace yourself, I don't mean to worry you but want to make you aware of how Dad reacted in the days following the funeral. For a couple of days his behaviour was odd - nothing strange there, ony to be expected. On about the third day he announced that he knew Mum wasn't dead - she had run away to get away from him and I had helped her - he even described her escape from the coffin and into a getaway vehicle that he had spotted in the cemetery. His mental state deteriorated rapidly and he ended up being sectioned for almost two months - his consultant said that it was Dad's way of handling grief and guilt over Mum's death.

Just before Christmas he was discharged to his own home with a care package and lots of family support - he's still in his own home but is deteriorating.

I guess what I just wanted to say was that we think that AD sufferers are coping in their own way - but their own way is a mystery - I don't think you can change the way that they cope because you've no idea what is going on in their minds. You may find that your MIL is ok - I hope so but be aware that it could be a really bumpy road!! But then aren't all roads bumpy?!?

 

[SkyHigh]

Thank you All for your replies.

Kath TN, we have prepared ourselves for the bumpy road (or as well as we can do) - we have our seat belts on any road

Today was good though. I went up to see her mid afternoon after my other half (her 1st son) woke me again at 3am this morning to say he was worried about what mum might wear for the funeral. I took her her token Madeira Cake (it's her favourite), and we chatted for a while, reading the through the 100 or so cards & letters that arrived in yesterday's post. She read all of them (or appeared to) and commented that she too would miss him and that he was a wonderful man. I asked whether she wanted me to come upstairs with her and choose a nice outfit to wear on Tuesday. What made me chuckle, is when I suggested the pink suit, she not only acknowledged that it was too hot to wear tweed, but quite adamantly professed how inappropriate it would be to wear THAT to Al's funeral.

Anyway, we decided on a skirt, predominantly black, but with a nice floral print. She wants to wear a short sleeved black top (which i am sure she must have somewhere, but which we couldn't find) so I'm off to good old dependable M&S in the morning to get her one. RESULT - in that she remembered the funeral was on Tuesday, knew that you should wear black, and also thanked me most sincerely for helping her choose what to wear.

My only concern today, was it seems over the last couple of days, she's started to avoid her usual daily routine of "doing her hair" - and whilst I fully appreciate this could easily be the normal response to a woman who has lost her husband of 40yrs, I did notice also, that when she got undressed to try the outfits on, she didn't smell as fresh as usual. It was hot today granted, and my other half had taken her out for a long walk this morning, but I'm wondering on how to approach the issue. I promised DIL that I would make sure she still bathed etc as she has always been pretty meticulous about that sort of thing. He was most embarassed when he asked me to look after her on that front, and me being Miss "no problem", really had no idea what a sensitve subject it can be. I think part of me thought that all was OK on that front and that it would be a long time, before either myself, or her 2 boys would have to worry about her personal care.

Anyway -

How does this sound - I was thinking that tomorrow night (night before funeral), that I suggest she has a nice soak in the bath and relax, as "tomorrow will be a long day"? I know it sounds daft, but I really would hate to embarrass her by saying it any other way. I do often ask whether she has had a bath - possibly too subtly - ie - was there enough hot water when you had a shower this morning, or, do you still have enough bath salts left after your bath this morning etc etc.....

Ahhhhhhhhhggggggggggggghhhhhhhhhhh!

I think we'll just get Tuesday over with and worry about the rest later.

Once again - thank you for listening!

SkyHigh

 

[Amy]

Hiya SkyHigh,
I think that you are going to be a wonderful carer! MIL and sons are lucky to have you. Hope that Tuesday goes OK. Will be thinking of you.
Love Helen

 

[panda]

good luck tomorrow

My step Father died last November of cancer while he was in hospital mums memory was a lot worse. On the day he died she rang all the family to tell them only she told every one a different story. Some were told we had just been to his beautiful funeral and others that he had died in the country somewhere it was bizzare to listen to. On the day of the funeral she kept asking me why so many people had cometo visit, and wanted to know if we were going some where nice. But she had her best black outfit on somewhere in her head she did know what was going on , she was great at the funeral and after talking to every one that came. She also remembered the service and the lovley priest. Things have been a struggle since because it became apparant that my stepfather had been hiding from us how bad mums problems were. But by taking one day at a time we are getting through, also the support of all on this site is amazing. So good luck I am sure it will be ok let us know how it went xx

 

[Kayla]

Black for funerals?

I would normally wear something black for a funeral, but when it was my Dad's funeral in July 2000, it just seemed inappropriate as he was always such a cheery man. I wore a plain, cream skirt and white blouse and my Mum wore a beige suit.
Very few people actually wore black, most wore neutral or dark clothes. At Salvation Army funerals, some people wear white or light colours.
I hope the funeral goes as well as possible and you are able to help your MIL get ready easily.
Kayla

 

[Lila13]

Some of my colleagues were going to an office Christmas Dinner, and someone thought they were going to a funeral, they were all in black and all looked miserable.

 

[Carolann]

What do we do now ?????

My dad sadly died in March this year, he went into hospital a couple of days after Mum who has Dementia went into a Care Home. She knew he was ill but had not been to see him in hospital. On the day he died we told her and she cried but seemed to forget over the next few days. To be quite honest I was'nt sure about Mum attending Dads funeral but I spoke to her Social Worker and as she said ' Who has the right to stop a wife attending her husbands funeral ' and put like that I totally agreed. So on the morning of the funeral one of the care Home staff who Mum is particularly close to brought her to the Church and we all met up outside (after a discussion with all concerned it was decided that it was better if Mum did'nt come home and leave with the funeral party from home as she was still settling in at the Care Home). She sat through the service stroking the picture of Dad on the Order of Service. At the tea after the service she really enjoyed herself as she thought she was at a family party. However, a few days later she kept asking why dad was not visiting and we tried to change the subject she the seemed to forget about it for a couple of weeks. However, she kept on an on about Dad and I had to tell her that he had died, she accused me of not telling her and she said we should have let her go to the funeral and that she was disgusted with us for not letting her attend, she cried and we cried and it was really hearbreaking for all of us. However, a couple of months down the line she does not mention him very much at all. I am glad she went to the funeral, I think it was the right decision, but that does not mean it would be right for everyone.
If anyone reads this and has had a relative in hospital who has dementia I would like to know their experience. My Mum has been in hospital since Sunday waiting for a hip repair op. it was supposed to be yesterday but they ran out of theatre time. She is totally confused about what is happening to her and is on a ward with 5 other ladies who do not have dementia and who are not sympathetic at all - and I am really upset for her, in fact I have spent most of the morning at home crying - its not going to help her I know but thats the way I feel. Any thoughts would be appreciated.

 

[Helena]

A friend of mine was in hospital last year having a plate put in a broken femure .......same situation 6 bed ward and the lady opposite had dementia and kept them awake all night with her yelling and shouting and all day was abusive too

I cant blame those 5 women for being thoroughly fed up and i truly do not think it was fair on them when they were trying to recover from operations

 

[Kayla]

What do we do now?

When my Mum broke her hip, she waited 48 hours for the operation, which was disastrous for her rheumatoid arthritis. The lady opposite was involved in a car accident, but the other patients were all elderly and in varying degrees of dementia. The hospital seemed to have no overall care plan at all and for some unknown reason, there were no namecards on the beds, which made things even more confusing for the patients. I didn't hear anyone call my Mum by her name and visiting was very restricted, which meant that Mum had no help with feeding and she lost a lot of weight.
Mum was in an ordinary care home before her fall, but was so confused and ill after nearly four weeks in hospital that she had to go into a NH. The elderly need care workers and the personal touch when they are in hospital and visiting should be much more flexible. Hospital can be a very frightening place for those in the early stages of dementia.
Kayla

 

[Lila13]

Every time I've been in hospital as a patient or a visitor or a volunteer there have been patients in varying states of dementia, often not visited for weeks or months on end. I thought it was just part of being in hospital.

 

[Kath TN]

Hope today went OK.