New to this... handhold/crystal ball anyone?

[Heartbrokendaughter]

Hi all

Didn't think I'd be in this part of MN ☹️

Looking for advice/support/how things will pan out for my lovely mum who has vascular dementia and Alzheimer's.

She got her diagnosis a few months ago, it was expected but still a massive thing to take on.

It feels overwhelming but I'm very aware that we will look back at the current "bad days" as "good days" as it progresses.

I'm looking for what to expect? I know a decline is inevitable despite medication to hopefully slow progress but how does that pan out.

The difference even in just the last 6 months is heartbreaking. She is like a shell of the woman she was but I'm very aware this is only the start.

She can't do barely anything by herself. She can't cook, she doesn't understand she has to eat my dad just puts food in front of her as she hasn't got the ability to organise her day. She sticks to the same script when talking eg how are the children how is DH then 2 minutes later the same thing again. She can't go shopping, she can walk to the shop but gets there and can't remember what she wants or if I go with her with a list she doesn't understand how to pay for things.

This is meant to be mild dementia apparently.

The most cruel thing is she's only in her 60s. I never thought I'd be dealing with this in my 30s.

My dad's exhausted, he's in good health but is understandably exhausted. We've talked about getting someone in eg a cleaner. Dad gets a break in a way when he goes to his hobby but mum goes with him and sits in the cafe. If he leaves her in the house she gets very anxious and can't remember where he is.

I work 3 days a week with a young family. I see them one full day a week but I'm aware this may need to increase but it's hard as I work part time and the one day I go to them I have to put DC in after school club as mum and dad are almost an hour from me so on a school day by the time I get there it's almost time to leave for school run hence the need for ASC but DC don't really like ASC. My sister seems them one day aswell. And they have friends dropping in a few times a week.

LPOA in progress and AA.

It's just rubbish 😭

Get them to accept help now, even if it’s just a cleaner, as that’s the hard part, getting them to let someone else in.
Can they afford a bit of respite, such as someone coming to sit with mum while dad goes to his hobby?

Thanks @DustyLee123 luckily they are not short for money! I've talked about a "companion" but they don't think they are at that stage yet

Sorry you're dealing with this.

I very strongly recommend a day club - some are most of a day, some just a couple of hours - so your dad can get a regular break while your mum is supervised. Sitting in a cafe alone may work for now, but in the long term she won't be able to be left unsupervised. She'll settle in a club more easily if she starts now.

And the better clubs aren't just a safe place, they have activities that are good for the attendees as well as giving the carers a rest.

The one my stepdad goes to is 10-3. Each time they have 2 physical games or exercise sessions, a chat about current affairs, a quiz, a craft activity that helps manual dexterity, and a singalong or similar, as well as some general unstructured socialising and a 3-course lunch.

Get Social Services involved and they should give you some hours of respite each week, free of charge, not means tested. Are you claiming Attendance Allowance, again not means tested, if not get help from Age Concern or similar to fill in the form to make sure you are using the correct wording.
Don't leave these things until you "think" you need them as they do take time to set up.There are no 2 people who have the same progression of the disease, my husband has deteriorated quite a lot over the last month but at the beginning it was slow.

I echo the advice to get things in place sooner rather than later, if possible. Companions, day clubs, anything. My stepdad also has vascular dementia, he gets quite stressed by anything or anyone unfamiliar these days.

Thanks all. Does it ever stop hurting? Every time I see her I come away crying as I'm losing my mum, and this is meant to be the mild stage.

The consultant she estimates she has around 5 years to live. So she might not even see 70 this is so unfair.

The consultant said a "gradual" decline but what does that mean in practice?

Sometimes her memory is just few seconds like when I see her she will say hello and give me hug, then turn round, then maybe turn back to me and be like oh hello! And another hug. Obviously I want as many hugs as I can get before she can't do it anymore but she literally doesn't know she's just doen it iyswim?

'They're not short of money' so now's the time to use it.
Carers, gardeners, cleaners, respite etc etc. get people going in and out. Even ad hoc. Be very careful how much you commit. You have to think of your mental health and prioritise your DC as things will only escalate.
Your parents are happy for you to put your DC in ASC for their benefit already?! Red flag for what expectations of you may lie ahead.
Your dad may be exhausted but he has choices that don't always involve you.

Bit harsh. Where has the OP said her parents are happy for dc to go to after school clubs ??

The consultant said a "gradual" decline but what does that mean in practice?

It tends to.go in steps rather than being a completely steady rate of change. And at each stage - but particularly the earlier ones - you'll probably find some things are intermittent. It's very individual though, so impossible to make firm predictions.

Does it ever stop hurting? I keep thinking I'm going to wake up and this has all been a bad dream. I feel like it's another thing I have to cope with and I don't know where I'm meant to find the strength from 😞

Yeah it's rubbish and I totally empathise with the situation you are in. Your mum is so young to be going through this and it's so hard on the family.

From a purely practical point of view it's important to start planning and - to use a very MN phrase - getting your ducks in a row. As things progress your mum and dad are going to need more support and more care. It's important to remember that you DO NOT HAVE TO BE THE CARER. It's easy to jump in at the beginning with running them to hospital appointments, a bit of cleaning, perhaps staying the night to give dad a break, and before you know where you are, you're there 24/7, your relationships with your partner and own kids is broken and there's no easy way out as social services assume you're happy to continue.

So yes, getting them to accept a cleaner is a positive start as you can build from there. Contact your local social services and talk to them about getting a needs assessment, this might take a while so get the ball rolling. Investigate whether there's a dementia support group or charity in your area - local to where my parents are there was a great centre which ran events weekly for people with dementia and their carers, they would do pub lunches or coffee mornings where everyone is in the same boat and mum could relax and have a coffee with other carers, knowing dad was safe and being looked after by a trained person in the other part of the room. These groups can also give very useful advice on things like Attendance Allowance - we helped mum claim that for dad and they used the money to fund things he needed to stay at home. They were not short of money either but because this money was specifically to help Dad we told them it HAD to be spent on his care or the government would be cross.

Alzheimer's is crap in that you lose people twice. Once as they gradually slip into the dementia, then when they finally die which comes with very mixed emotions as it's partly a relief that the suffering is over. There is lots of information on the Alzheimer's Society website about the stages of this awful condition. Not easy reading but it is good to be prepared.

There are also support groups for children and other relatives of people going through this and I'd really encourage you to seek support. There are lots of people on the elderly parents forum on here struggling with similar issues. One thing someone told me was it's like the announcement they make on planes about oxygen masks - you have to make sure yours is on before making sure other people are OK. Make sure you're OK and getting the support you need.

I’m on this journey with my parent. Buckle up, it’s a long ride.

It’s impossible to predict how it will go or for how long. With most physical illness, there’s a prognosis. With Altzheimer’s could be 5 years, could be 15. I’m at 10 years and counting. If they’re cared for physically, there’s no reason they can’t go on and on.

You’re doing your grieving now. When they do die, families often say they only feel relief. It’s not called the long goodbye for nothing.

It makes me very sad.

@theresnolimits I think it's absolutely like a grief. I said the exact thing to my husband a few days ago.

I'm bloody furious but I don't know what at...the dementia I suppose. The tangles, plaques and proteins that are killing off parts of my mum's brain. I'm so angry with the situation.

Work is good for me as at work I'm just "Mrs heartbroken" I put my work face on and all I think about is work (I'm a teachers assistant).

But I'm tired, so very tired .

It's definitely the long goodbye and it's bloody unfair.

Your mum's situation is a bit harder to predict because she has 2 different types of dementia. Alzheimer's has a more steady progression, whereas vascular dementia can progress in "steps" then level out for a while. Certain types of "events" can be associated with a sudden progression or loss of skills. (Things like falls, hospital stays, UTIs, house moves).

You're right that it is a long goodbye and that you are grieving while still spending time with your mum. That's part of the reason it's important to get good help in place as soon as you can. Good companion carers can take your mum as she is now and help her enjoy her time, without it causing them pain. This is a time when the whole family need support around to help you through.

Social services will do nothing, especially if they have money. As others have said, pay for carers, cleaners etc to take the load off.

Spend as much quality time with her as possible and let her spend time with her grandchildren while she still can xx

The other thing I would say is (if your mum still has enough lucid times to make POA type decisions), it's worth doing the really depressing thinking about what interventions she wants if she gets a chest infection or has a heart attack or whatever.

My grandma has been determined that my granddad should have as long a life as possible, but he's spent the last years of his life really astonishingly distressed a lot of the time, as a result of his dementia. I really think the best thing for him would have been to let him go quietly rather than treating with IV antibiotics. I understand why she made the decisions she did, but I'm not sure if it was the decision my granddad would have made.

I'm so sorry you are going through this i was pretty much the same age and circumstances as you when my mum was diagnosed. It hurts like hell and you are being the strong one which as others have said takes a toll on you so i echo what they have said get things in place with clubs etc so you and your dad can get a breather. Things will decline over time and look ahead to long term care so that it doesnt become an emergency situation. Sorry that sounds so doom and gloom but eventually she wont actually be aware and will be quite content in her wee world it is harder on the rest of you so you have to be kind to yourself as well. I cried many tears watching my lovely mum fade but now treasure all the little memories support groups for families helped as they are usually full of people who know exactly what you are going through which helps. There are so many emotions involved in this journey and its very unfair i wish you all much love and strength. Your love for your mum shines out in your post and that will get you through this xx