Parent with Alzheimer's and a family wedding - what would you do?

[Emphaticmaybe]

Mum is at least 6-7 years into her illness, very confused, at times very anxious and doubly incontinent. Dad is a good carer but refuses any outside help other than family. Sister is getting married in the summer and very sad mum will not be aware but desperate for dad to be there, (been a long road to happiness for DSis.)

Dad has been aware of the wedding for over a year and as mum's condition has deteriorated has hinted that it will be difficult for her to attend. My sister and I have put a folder together of all the relevant services and phone numbers for Adult Social Services and enquired ourselves about procedures but we can't actually put anything in place regarding respite for mum without Dad's permission.

The problem is dad is now saying he has no intention of accepting any outside help and if mum is unable to come to the wedding neither will he. The wedding is in 5 months, mum is a little worse each passing month and the practicalities of her attending are becoming more and more difficult - she can no longer eat unaided, doesn't recognise us as her children and can become very emotional if in unfamiliar surroundings.

DSis is really stressed - she doesn't want to exclude mum but it's a large wedding and not an intimate family affair and she's concerned that neither mum or dad will cope in this situation, (dad already struggles with medical appointments, getting mum organised etc) and to be fair she really doesn't want to be worrying about them on her wedding day.

Older DSis is taking the place of mum to help DSis with her dress, hair and bridesmaids, (she lives near) and so my job would be supporting mum and dad, (I have DH and 4 DCs.) If I'm honest I am not looking forward to this but I would be happier to do it if I thought mum would actually get something out of the day rather than attending simply because my father refuses to have anyone else involved in her care for his own reasons while at the same time implying that we are being heartless for not wanting mum at the wedding.

How would you handle this?

[GooseyLoosey]

Can you hire a carer for the day? No idea if such things are possible, but most things are. Then, if you could have a quiet space for your mum, it might work.

Sympathise with the problem. My parents were divorced at my wedding and dad is severly disabled and incontinent as a result of a severe stroke and just assumed that my mum would look after him. It made life hard before the wedding, but actually, nothing would have spoiled the day.

[weighingitallup]

It is so difficult isn't it. I know this might sounds harsh but how is your dad about it? Matter of fact? Upset? I juat think if he feels he cant attend then respect that choice and maybe organise very small "ceremony" at home? Give him those options arrange for care should he want it but leave decision to him. I lost my dad to alzheimer s its awful xxxx

[Havingkittens]

I agree with Weighingitallup. As much as I'm sure your father would love to come and be at his daughter's wedding, I'm sure he is extremely torn. I'm sure it's upsetting for him to think about not being there for her but also that he may feel he simply can't leave your Mum in the care of someone else. People with dementia can get very distressed when the familiar person is not there to care for them. It's nowhere near as simple as just making sure there is someone to cater to her needs. She might find this very frightening and if your Dad isn't there to at least share the care and reassure her when needed it could end up being a bit of a disaster all round I'm afraid. I also don't think having your mum at the wedding is a good option. Stressful for you both and the rest of your family, bewildering for your mum and potentially awkard for your guests.

My grandma has advanced dementia and it's taken a long time to be able to leave her in the care of someone else (over the course of years), and then only for a couple of hours at a time before she gets anxious that my auntie, who is her full time carer, is not with her. Even before she started having a professional carer, if I was there to spend the time with her to allow my auntie to do some of her own stuff she would get anxious about where my auntie was. My grandma and I are extremely close so it's not even as if I was someone she didn't know.

Maybe your sister can have a special day with your parents to celebrate their marriage, like weighingitallup suggests.

[Emphaticmaybe]

Thank you for your replies they're all very helpful.

I think you are right about it not being simple to leave a loved one in the care of a stranger and I have no doubt it would be distressing for my mum so I do understand dad's angst, (I regularly sit with her and she is anxious with me so a stranger would be very hard) but I just wish dad would be honest with DSis.

I think she would be happy to have a separate day with parents but dad has sent mixed signals about the wedding, even insisting on old family friends of his attending, (my sister would not have asked them otherwise) and never mentioning the possibility that both of them wouldn't attend just that it was getting more difficult to manage mum. We sort of followed his lead and presumed that the wedding would be the catalyst for getting extra help - which he really does need as he is not entirely well himself. We have obviously mis-read the situation and need to talk to him about how he really feels - he probably would like to opt out all together but has felt unable to say this

Thank again everyone

[Havingkittens]

I suspect there is quite a big gap between what your dad wants to happen and what is practically possible. It's probably as hard for him to admit this to himself as it is to be straight with your sister. Also, in my experience, dementia in its various forms can change week by week, or even day by day, so what may have seemed possible a couple of months ago may not be so now.

You really have my sympathy. It's such a heartbreaking illness to deal with.

[Heifer]

Having had a parent with dementia I understand your position. My mum would not allow any help from outside the family for many years. Thankfully realised that she couldn't cope alone and eventually took advantage on the help available, although in my opinion far too late.

Things can chance a lot in 5 months unfortunately and he may well accept help in the meantime. It wasn't until my Dad could no longer walk unaided that my Mum accepted help...

I had to have serious talks with my Mum, and although she was adamant he would never go into a home (and I think my Mum thought by allowing outsiders help this was the 1st step to putting him in a home).

I would talk to your Dad and say it straight that if he doesn't allow help then he will miss out on his Daughters wedding, and even say that this wouldn't be fair on her, it's hard enough her Mum missing out. I sounds as though the experience won't be good for your Mum so her going doesn't seen a viable option. This may sound harsh but sometimes these things need to be said (with love).

One of the hardest conversation I had was with my Dad before he was diagnosed (but we knew something was wrong) about him not being capable of driving anymore. He was outraged but I knew it was for the best..

Good luck, and I hope things don't become too hard. Unfortunately I didn't have Mumnset when it was happening to my family but I wish I did. I just know you will get so much support here when you need it.

[Emphaticmaybe]

Thanks Heifer - it's good to read other's experiences and get a bit of perspective.

[Liveinthepresent]

I feel for you too. My Dad had dementia at the time I got married - and even though he is no longer with us it gives me great pleasure that he was able to be there - I even managed to walk down the aisle with him.
Clearly his condition wasnt as bad - we managed by hiring a friend who was a carer to attend and had him there just for the ceremony and meal.

Sounds like your situation is much harder for your DSis day.
I think you need to try to have a conversation with your Dad about what the priorities are for DSis and your mums care and then be prepared that as others have said it may still all change if her condition alters.
I can see from her perspective it would be awful to have neither of them there - possibly she needs to be really frank with your Dad about that. Perhaps he could just attend some of the day eg the ceremony is geography makes this practical.

Good luck

[PureQuintessence]

Can you try persuade your dad to accept respite a couple of hours per week from now on? Then the carer will not be a stranger. It could be good for them both if there was some help.

Alzheimer patients and their spouse will often form a very strong co dependency bond.

[whataboutbob]

Hello, my dad has alzheimers so I have some understanding. My dilemma on the day was whether to have my grandpa, who had Parkinson's. I realised that if he came, I d be carer and bride on the day. My mother pre deceased him and my only sibling has chronic mental illness and didn t attend. I m glad that realisation cut through the guilt. It sounds like maybe your dad needs to decide whether he wants to attend or not. I don t think your mum s attendance is a good idea, very sadly. She will be disoriented, possibly upset and disruptive. Your sister needs it to be a positive day, she has you there to help her make it special, and maybe your dad too. Good luck.

[Emphaticmaybe]

Thanks for your responses everyone.

DSis and dad have talked and it seems that the plan is for mum to attend with support from me and older DSis while dad performs father of the bride duties. Then after, as a family we will sit on a table together (rather than dad on top table) to support dad with mum and hopefully get through the reception meal at least.

DSis has made a back up plan for her DS to walk her down the aisle if dad feels nearer the time that mum really isn't able to attend. Hopefully this will cover either outcome.

I was just hoping the wedding would have been the turning point in dad accepting outside help but he obviously isn't ready yet. It just worries me that if something happens to him we have no plan in place for mum's care. My dad's concerns about her being looked after by strangers while he's alive don't seem to stretch to when he passes away. He has made no plans for mum and won't allow us to, even though he is not in good health himself.
Argh... It is so frustrating.

[Supersesame]

Not exactly helpful but it reminded me of this story I read recently with a lovely outcome.
corkindependent.com/20130131/news/aisle-be-there-st-lukes-home-hosts-special-wedding-S58469.html

[Emphaticmaybe]

Supersesame - thank you that's a lovely story.

[PureQuintessence]

Good luck on the day.

Just remember a change of clothes for your mum and extra nappies.

Always essential when we take my mum out.

[riskit4abiskit]

If neither parents felt able to attend could you video the ceremony and then have a family buffet type little party at home?