Severe Learning Disabilities and managing bereavement

[Pogul44]

My brother is an adult with severe learning disabilities. He has been living in a residential care home since 2004. He lacks capacity and functions possibly at the level of a child of around 18 months although he has not been assessed as such by a professional. His understanding is very limited and he can only express himself using single words.

He has had regular contact with family and stayed with our father most weekends before Covid-19 came along when everything changed for all of us but especially those in care homes.

Our father has terminal cancer and will leave us shortly. My dad has been self-isolating at home and my brother has not seen him to see the decline in his health and will not see him before he passes because of restrictions. It is likely he will not be able to attend the funeral either as he will not be able to see relatives and socially distance as he will not understand why he cannot touch people when he has contact with his carers. He just doesn't understand.

We have lost relatives before and each time he has seen the decline, visited the hospital with family, and attended the funeral so there was a progression even if he doesn't understand the concept of death.

This time he has not been part of any of this progression which means he went from seeing my dad for the weekend every weekend, to seeing him very occasionally through the window, to never seeing him again.

We have a sister who lives nearly an hour away from him who saw him occasionally pre-Covid, and I live abroad and hope to visit monthly when permitted, so we need to work with the care home on this.

We have had difficulties with his care previously but they have been working on improvements the past couple of years and a new and experienced manager started at the beginning of the year. Early indications show that she could be a good manager so I am hopeful that between us we may be able to help my brother through one of the most difficult losses of his life.

Can any of you offer suggestions on how to manage this very difficult situation?

Any suggestions or ideas are gratefully received.

Thanks and kind regards,

Pogul44

[Jofisher]

I’m so very sorry this is so sad to read. Your brother needs an IMCA that can support him in his own right, I would also suggest speaking to Mencap they should have a lot of resources on bereavement that could help you. I would record as much as possible with timelines videos photos things at your brothers level of understanding. Maybe a memory box from your dad to your brother all special things that are special memories that they shared and that are meaningful to them. There should be psychological input from the home if needed surety and can’t exceptions be made as they are exceptional circumstances have you asked. I wish you luck with everything

[Pogul44 in reply to Jofisher]

Thank you for your reply and suggestions Jofisher.

Dad is the person that has made decisions on my brother's behalf up to now and I shall be applying to take over this responsibility. We have looked into whether we needed an IMCA before with a solicitor but it was decided against as we are so involved with my brother's care. Although I am abroad I am the person who deals with problems and administrative matters when they arise, so my difficulty is that I won't be able to give physical contact support to my brother. Thanks for the suggestion though as it is an important role that others may not be aware of.

I have asked my sister to make some recordings and take photos so thanks for this suggestion too. The memory box is also a great idea and we'll get to work on that too.

I have spoken with the care home today about progress. The care manager had gleaned that things weren't great but she hadn't been told the situation before now. Fortunately she has many years of experience and has worked through this type of situation before so she is able to get the ball rolling. She suggested she speak with the owner of the care home to discuss possibilities around my brother visiting dad, so she demonstrated her experience which was comforting. There are risks with this though as my dad has a lot of carers attending and my brother has only had one dose of the vaccine. In addition, the last time my brother saw dad he was outside the window walking and talking, so seeing dad bedbound in a hospital bed surrounded by medication might come as a shock to him. It's such a difficult situation although I appreciate that many others are struggling with their own circumstances.

Thanks again for your kind words and suggestions.

[Jofisher in reply to Pogul44]

I’m glad your starting to find your way through such a difficult situation and it must be so hard for you when your doing it from afar like you are. I feel for you all take care best wishes Jo

[Sarah_Mencap]

Hello

I am so sorry to hear this. You are doing a great job of trying to prepare your brother for this difficult time. This must be very hard when you are dealing with your own feelings about this too.

We have some information about bereavement here - mencap.org.uk/advice-and-su...

Dying Matters have some resources here, including a short film - dyingmatters.org/page/peopl...

I also found a few other online resources:

> mariecurie.org.uk/blog/how-...

> funeralguide.co.uk/help-res...

I really hope the new management means that your brother's care meets his (and your) needs. You sound like you are doing all the right things to build a positive relationship with them. They are likely to have helped people deal with grief before, but as you say, these are very strange times and people are missing out on seeing people and getting the chance to get used to the idea.

Best wishes

Sarah

[Jfmj in reply to Sarah_Mencap]

Hi Sarah thank you so much for the links, my Mum died a few months ago and it’s been really difficult trying to explain to my severely learning disabled daughter, she was able to go to the funeral but she keeps asking to visit Granny -so I shall start working through the info/help sheets from the links. Like jofisher I had no idea how to go about explaining death on a level she might be able to understand.

[Sarah_Mencap in reply to Jfmj]

I am very sorry to hear this. I hope you have the space to deal with your own grief too.

Best wishes

Sarah

[Pogul44 in reply to Jfmj]

Hi Jfmj, I'm so sorry for your loss. I had a quick read through the suggestions Sarah made and I think there are some things that could really help my brother and I hope your daughter too. I wish you all best wishes for success in trying to navigate this very difficult task whilst managing your own grief.

[Pogul44 in reply to Sarah_Mencap]

Dear Sarah,

Thank you for your suggestions. I have had a quick look through and I am sure, along with the care home, we will be able to work out a plan of action.

I spoke with the care home manager today and she was very empathetic and informed me she has experience in such matters and has prepared this type of plan before. She also offered to speak with the owner of the care home to discuss the possibilities around my brother visiting dad. There are a couple of risks that I mentioned in my reply to Jofisher, so I won't repeat them, but I am hopeful that we can make the best of a bad situation in supporting my brother through this difficult time.

I realise it may take some time to settle my brother but we can only do our best.

Thanks again for your kind words and suggestions.

Best regards,

Pogul44

[Sarah_Mencap in reply to Pogul44]

The care home manager sounds great 👍

Wishing you and your brother all the best for this.

Sarah