To ask for a hand hold. Don’t know how we are going to cope

[Soph922]

My BIL has been fighting cancer for 2 years. He’s been in the hospice the last few weeks and the doctor came to see him and said it’s very likely he is now in his last couple of days. Everyone has come to see him and be with with him. He’s in a very very deep sleep now, unresponsive . He is only 62.

My Dsister is the same age and has early onset dementia. She doesn’t understand how poorly he is and has been denying it for many months. Whilst we are here now with him, she is talking about the caravan holidays they will have in the summer. It’s heartbreaking. She is in the moderate stage but has denied carers and shouts and swears at them. She wants family there all the time though and will call when I’m at work and want me to be there. We visit and help out as much as we can. She is wanting to leave the house late at night by foot, which isn’t like her at all. I’m worried about how she is going to cope when he is gone. I just don’t think she will

They have two grownup children, in their late twenties. One lives 150 miles away and had to get a train in the early hours to be here.

Just looking for a handhold as I don’t know how we are going to cope moving forward

My very dear friend, who had 4 sisters with dementia, once said that once they started to wander, that was the time to consider a specialist carehome.

My mil isn't wandering but does need 24 hour support. It's very hard on her carer. It would be impossible for us to do this, so we understand how difficult it is.

Time to get social services in to assess needs, if not already done.

Handhold

What a terrible position you are in. I'm sorry

I’m so sorry. Yes a referral to social services is required if your sister can no longer live independently. They will do a needs assessment.

This is love. Remember to love yourself as well. Family is a beautiful thing.

Handheld and sorry op. I think your dsis needs professional support if she is wandering. X

So sorry about all your worries.
If she's starting to wander (looking for him?) then you need to contact arrange a referral to social services. Does any family member have her health POA?

I am so sorry for your loss OP. I really hope your BIL passing is peaceful. There are a number of options for your sister. It may be worth thinking about one of the family getting power of attorney over her affairs now before she gets worse. Its sounds as if she needs full time care quite soon either someone living in with her or a care home. If its a family member they will be able to apply for carers allowance and respite care. It is really really hard to be a sole career for someone with dementia so i would think really carefully about this.

Perhaps the best time to look at options for your sister is when your BIL has passed away and his funeral has taken place and all affairs are settled etc. The adult children will have their own views about how to proceed.

I am so sorry you are dealing with this OP.

So sorry you are going through this.

To get the maximum amount of support for your sister you are all going to have to step back and say - “sorry, no can do, we have work and other commitments and cannot be there for her every day”.

Keep at it like a broken record with social workers involved until her care plan is organised. If she shouts at them so be it.

If it isn’t working she will have to go into a fold or nursing home full time.

So sorry again, this is a horrible situation for you all to be in. Heartbreakingly sad. 💐

@Soph922

Also, write down and document everything, and if she sees anyone have copies of all the reports and letters. You need this as evidence. X

Big hugs.
Restlessness is common with dementia. No amount of reasoning will help here.
Without a competent adult in the house she is going to be a risk to herself.
You are going to have to engage Social Services as she is a vulnerable adult. Don't ask her children to step in. Her wishes will be taken into account up to a point.

I'm so sorry you are having such a tough time with DSis and BIL.
It must be so difficult for their DC. Do they have POA as they are in their late 20's?
Hopefully you can support them make difficult decisions regarding their DM after the sad loss of their Father, and you can be there for each other during your shared grief.

That does all sound like so much to deal with.

With your sister in law, you also need to think about the needs of others. Including yourself. What if she causes a fire in her house? There is a danger to neighbours perhaps or the fire service. If she is wandering she could cause an accident or upset someone by saying something confusing or aggressive, or mean they need to get her back home.

I’d agree that if she’s wandering then it’s time to get her needs assessed. If something bad happens to her or others and you knew what point she was at, you’d feel terrible. It’s not all on you. Use the help that is there.

🤣

OP, you can’t deal with Dsis on your own for the next 20 years.

SS needs assessments followed by looking at a care home - it will be horribly tough but it’s much the best way for DSis. Persevere.She may well recover a bit once she’s in a safe place, get happier and have a new lease of life.

Don’t mention BIL or his health - it will
Just upset her. She will - make sure you can take breaks from her to minimise your own pain.

How sad. I think her kids will have to step up. Sounds like a care home for her, but she might not understand when her dh goes.

From my experience, the surviving partner in this exact situation seems to explain away the absence of their loved one. They are at work, have just popped out, etc etc. I don't know how often that's the case, just what I've seen in my experience. So for your poor dsis that part might not be the problem you think, more a case of everyone else managing their words around her. However she does need proper assessment & support because it will become too much for you to provide for her - even with all the love in the world!

I'm so sorry for what you're all going through, be sure to take care of yourself in all this.

You poor thing, one day at a time for the next few weeks, x

I've worked in dementia care homes, it's honestly better to go before she reaches the advanced stage - that way she'll put down some memories there, know her way around and not be scared when she wakes up every day. Leaving it as late as possible feels kind, but can end up causing more distress.

I'm sorry for everything that's happening. My mum who has dementia moved into a care home last year after my dad died. It was for the best as she isn't lonely any more and I am not stressed trying to help her as well as work and live my own life.

Come over to the Dementia board - in health I think. And the Elderly Parents board - in Other Stuff I think. There is so much support and advice over there from people who have already lived what your family is now going through.

How heartbreaking 💔

I'm so sorry for your worries. I agree with pp, just take everything a day at a time for now - in a few days when BIL has passed then you can face that next challenge. I'm not sure it's one you can properly prepare for emotionally as you'll be grieving whilst also caring for your sister who may not react as you'd expect.

As pp have said, consider specialist care for her, it will be best for her and also for you as her family to know she is with people who can keep her safe in the times you can be there.

Sending strength x

I’m so so sorry OP - sounds like so much happening and it’s all so hard to deal with.

for your sister I 100% recommend speaking to the Dementia UK admiral nurses. They can help you with ways to help your sister through her grief and also advise you on how to manage your sisters diagnosis.

I know it can feel very lonely dealing with this but there’s lots of support out there for dementia which can help when the social care side of it can be very hard to access and feel very slow.

Once women start to wander the next stage can be removing clothing. A needs assessment should be arranged soon but for now you all have enough to deal with.

Her children need to get her doctor to check her medication.

So sorry your BIL is in his last few days, i hope he passes peacefully. Your poor sister really needs specialist care now, my Dsis had dementia and as much as we tried to look after her we couldn't and were doing her a great dis service by trying to keep her at home. Please access help before she comes to harm.

Just posting this link for you incase its of help in the coming weeks.
https://www.dementiauk.org/information-and-support/specialist-diagnosis-and-support/admiral-nurse-dementia-helpline/

I'm so sorry, I have no advice at all. My DF (62 aswell) is going through some serious health issues aswell at the minute and I've not been able to sleep/function very well the last few weeks. We've not had any diagnosis yet.
It's constantly at the back of your mind I imagine.

Giving you a huge handhold, I'm going to follow your thread so you can vent whenever you need to 💐

Currently DBIL is still with us but is unresponsive and his breathing has changed but we are talking to him and letting him know we are there with him.

However, my Dsis keeps saying ‘come on, we need to leave and let him sleep, he’s sleeping, let’s go now’.

We have told her to hold his hand and speak to him but she is refusing. So sad. She said she won’t as she doesn’t want to wake him up. We have told her what is going on and that she can let him know she is there and comfort him but she keeps saying ‘he will be fine, he will wake up again soon’

Just utterly heartbreaking situation.

Thank you all for your kind words and practical advice