Caring for Mum after sudden death of father-options for care

[Elizabeth G M]

My father was the only carer for my Mum and he died suddenly a week or so ago. Myself and my two siblings are now caring for Mum. She lives 2-4 hours from us all (we are scattered) and two of us are there at a time as she has a lot of care needs; I think my Dad was covering up how much he did, but also the disruption to her life has caused her to be more distressed which has also an impact on how she is managing. She has only just had diagnosis of mixed dementia (Alzheimers and Vascular), but is quite far advanced, needing total care. The most difficult thing is the nights; she can be up multiple times, needing the toilet sometimes, and talking in distressed manner at others, therefore we are struggling with lack of sleep.
She expressed a wish not to be in care home, and my Dad never got care in because they were private people. However, we cannot continue as we are. We are looking at homes in her area as well as where some of us live. There is also the option of Live In Care. I wonder what people's experiences have been in similar situations? She is being assessed for a place locally to her this morning, and my brother is looking into live in care, but I wonder if that will be hard given her needs at night and none of us living locally to nip in when needed.
Any advice/experiences?
. Thank-you
Elizabeth

 

[Sarasa]

Welcome to Dementia Support Forum @Elizabeth G M . First of all condolences on the loss of your father. He was obviously doing a lot for your mum and hiding the extent of her needs from you and your siblings.
If your mum will be self-funding then you could arrange a live in carer. However this would be very expensive as if your mum isn't sleeping through the night a waking carer for the nights would be needed as well as for day time care. You'd also probably need more than one carer so that breaks can be taken.
A care home would be a more sensible option. If your mum has family and friends in her locality that would visit then a home near where she is might be a good idea. Moving near one of her children is great as there would be someone able to get there quickly in an emergency, but if it means the others have a greater distance to travel to see her maybe not so good. I wonder if this fact sheet might help you decide.

Care homes: When is the right time and who decides?

Advice and practical tips for carers on when is the right time for a person to be moved to a care home.

www.alzheimers.org.uk

I'm sure others will be along soon with their tips and suggestions.

 

[Jessie5]

I am so sorry you have lost your Dad and now find yourself caring for your Mum. It must all be so very hard at once.

My Mum’s care needs were more gradual. But she did get to a point where she started wandering and wasn’t safe alone. My sister and I moved in with her as a tag team and it was absolutely exhausting as I counted her up 13 times in one night.

I did look into live in care. But it was very very expensive and would have drained her savings in a matter of months as she would require a ‘waking night carer’ (needed for someone up more that twice a night). An agency was super expensive but had the advantage of not having to worry about what happens if the carer is ill and they would take care of employment rights and cover holiday. I did look at hiring carers myself which is cheaper but I was really worried about vetting them, what happens if they were ill or on holiday and if you employ them you are liable for them as your employee which felt more than I could manage.

So in the end we went for a care home. I really didn’t want to. And was really sad to move her. But it has worked out well over 2 years later. My sister and I were local to Mum, so didn’t have the worry of where to look for a home. If Mum is self funding it might be worth while finding somewhere near to at least one of you? If the local authority it paying you might not get a huge choice.

It is all really sad and awful, but knowing she was safe and well looked after always such a relief after years of worry.

Good luck finding a solution that works for your family. X

 

[SAP]

My mum had live in care for 12 months as this was the only safe solution during the various lockdowns in 2020. The only way this could happen was because she was able to pay for it. Most LA will not pay for live in care as it is eye wateringly expensive, way more than residential care. Mum hated it and became very depressed. She is now in a care home and is very content in herself. I think full time care at home can be very isolating and frankly I had just as much to do because I still needed to maintain her house, get her shopping in and arrange/ attend appointments whilst living 300 miles away. It was a huge relief when she went into a care home. .

 

[northumbrian_k]

Hi @Elizabeth G M and welcome from me. You have received good advice already. It certainly sounds as though your Mum now needs 24 hour care for her safety and welfare. I can't comment on live in care as I have no direct experience. I took the hardest decision of my life when deciding to move my wife to a care home. I can say with confidence that this was also the best thing that I have ever done for her. More than 4.5 years on she is content, looked after in a way that I couldn't manage, and is clearly loved by the staff. If you can achieve something like that for your Mum it will be so much better than struggling and failing to maintain her life at home.

 

[SkyeD]

Sorry to hear of your sad loss @Elizabeth G M
I was in exactly the same position in September 2022 when my dad died - he was mum's carer (she had dementia) and covered up a lot of issues. He'd already had a health scare himself, but they refused carers (they were also very private people) and said that they could manage on their own. Mum was constantly asking not to be put into a home, and dad respected those wishes. How he coped, I'll never know.

Unfortunately, mum didn't understand that he'd died, and we had seven weeks of pure hell trying to manage her needs (both my sibling and I lived over 12 miles away). She was unable to do anything for herself, had poor mobility, was very hard of hearing, and got into a right state with not taking medications, wandering, all sorts. She was very vulnerable and basically putting herself at risk.

She rang the police several times within the first week of dad dying, convinced that she had prowlers, seeing people in the house etc. Our local police were really helpful and got social services involved for me (they have a 24 hour response time when the police are involved, whereas I could have been waiting for weeks/months). Mum had a care needs assessment but she refused to have carers in. We installed a camera and had motion sensors fitted.

One morning, around seven weeks after dad had died, I found her on the floor, wedged between bed and radiator, lying in pool of urine. I estimated that she'd been there unable to move for between 3 and 6 hours. Cue ambulance, hospital etc. She was in hospital overall for four weeks (caught Covid in there after being treated for a UTI). I had a best interests meeting with the hospital discharge team, and from there she was placed into a care home. To be honest, they recommended 4 carers per day in her own home but I flatly refused as I knew that she wouldn't cope.

Mum spent seven months in the care home and during that time, despite constantly wanting to go home, forgetting who I was, becoming physically aggressive (and a few other things), she seemed content. She was safe, well-cared for, and loved by the staff - all I could hope for to be honest. She sadly died in June 2023.

I don't know if that helps?
S x

 

[Spidey01]

I’m so very sorry for the loss of your father.

I can share a quite similar experience. My father died in April 22, also unexpectedly but hadn’t been in the best of health. He was mum’s carer who has Alzheimer’s. Never officially diagnosed.. but I’d say about 6 years since initial symptoms.

The family home was near Glasgow.. I’m in Birmingham and my brother in the north east.

We had to find a solution quickly. Because of my brothers family commitments I volunteered that mum should come to a care home near me. I decided I couldn’t care for her myself as I’d have to give up work and my husband is already supporting his father in law with dementia. There are a few spinning plates. However, the support from a good care home is invaluable. We all need the support from dementia focussed care. Happy to talk more xx