Family disagreement on respite

[Calon Lan]

Hello @Sporran_100

I’ve picked up your most recent message and then read through the complete thread here. I am so sorry you have to deal with such an unsympathetic attitude from your wife’s sister.

It’s very clear that you and your wife are doing absolutely everything you can to care for and support your mum. You are doing nothing wrong in planning respite care. In fact you are making a courageous and difficult decision to ensure proper care for your mum while you both have a much needed break. I know from personal experience that this is not an easy decision.

I looked after my mum with Alzheimer’s and vascular dementia for nearly three years in her own home with very little support. This was partly due to covid, but also due to lack of understanding and support from other siblings. I believe I was very, very close to complete carer breakdown before I made the decision that I could no longer cope. I believe you are correct that people with no experience of caring for someone with dementia have no idea just how stressful and exhausting it can be.

It’s sad when family relationships are damaged as a consequence of different views on care for someone with dementia. You and your wife are providing all the care and support. You have the right to decide what is best for your mum. You also have the right to decide what is best for the both of you - that is just as important.

I hope you find some way to get the respite break you need. Sending you thoughts and best wishes.

 

[Sporran_100]

I am at a loss as to why you are waiting for this relative to make the decision. Just go ahead and arrange the respite.

Hi Cymbid,

That's what we have done, we have told them all that we will no longer engage in conversation regarding their views on respite and will inform them once mum goes into respite because it will happen whether they like it or not.

 

[Sporran_100]

My husband and I are in very much the same situation as you. Everyone has an opinion about respite and care homes but nobody is prepared to help. Please please please stop worrying what other people think. You are doing an amazing thing looking after your mum and trying to keep her at home as long as possible but you are also entitled to a life that isn't wrapped around your mum's needs. I can tell you from bitter experience that if you don't take the time to focus on yourselves individually and as a couple that you are likely to regret it. Looking after a loved one with dementia greatly reduces the time and energy you have to spend on the person who is by your side. Don't let anyone tell you that taking a break is selfish or not in your mother's best interests. If your mother has the funds to pay for respite then that is where the money should come from and that's what should happen. The idea of having people who are virtual strangers in her home not knowing how to care for her and not knowing what makes her happy is ludicrous and should be treated as such. You are allowed to have your own needs and anyone who doesn't help with your mum should just butt out.

Hi Pvl,
Thanks for your kind words and sorry you have experienced a similar situation. We have now written them all a letter and stated that it is happening whether they like it or not and if they feel we are not meeting my wife's POA responsibilities then they should seek advice.