Mum who has advanced vascular dementia

jivebunny 6 years ago

1 reply

My mum has had dementia for around five years, unfortunately it wasn't properly diagnosed until 2016 after many attempts by myself and my sister advising him that he needs to get a proper diagnosis for mum, my dad partially came out of denial and followed through the process of getting mum diagnosed. Anyway to cut a long story short my mum has been diagnosed with advanced vascular dementia. She is now unable to walk, talk, eat by herself and is incontinent and has a stoma bag. My dad is doing a grand job looking after her on a full time basis at home along with carers who visit three times a day. However i see mum going down hill and he just does not see this and makes up his own reasons why she is like this, I find it heart wrenching. I now believe she is beginning to suffer. Unfortunately mum can't communicate when she is in pain or discomfort, I can only go on facial expressions.

I advise on various matters only to get a short Sharpe retaliatory answer which can end up in an argument. I now longer advise just to keep the peace but I continue to see my mum going down hill and is suffering and believe she would be better off in a nursing home. The only person dad will listen to are professionals such as a GP. Although I have a joint power of attorney I can't over rule his decisions. He said that he will have mum at home even if it kills him. She needs proper care with stimulus. My dad refuses to take rest bite care and believes the best care for mum is at home.

I respect my father an awful lot for wanting to look after mum but I feel useless when I see her in such a state at home, when I believe she could get better 24 hour care in a proper nursing home. 

I now find this heart wrenching when I go round to see them both and each visit now gets harder. Just don't know what to do?

Support 6 years ago

Dear Jivebunny,

I’m sorry to hear about your mum’s diagnosis and the concerns that you have for her.

Witnessing a loved one’s health deteriorating can be an emotional time. This may be heightened when family members have different ideas on how best to meet their loved one’s care needs.

You mention that your dad is comfortable receiving advice from health care professionals. Do you feel he would be ok with you both discussing the worries you have about your mum’s deterioration and the best way to meet her care needs together with someone like the GP? You could discuss with the GP if it would be appropriate for mum to be referred to the community palliative care team for help with pain management or any other support they may be able to offer.

Would short periods of respite in the home through a sitting service be an option? As well giving your dad a few hours break, your mum would hopefully get some stimulus from this longer period of time with a carer. The Carers Trust may be able to advise you of services in your parent’s area, https://carers.org/article/getting-break

He is also entitled to a carer’s assessment from social services; you can read more about this here - https://www.mariecurie.org.uk/help/support/benefits-entitlements/getting-social-care-and-support/assessments

If you would like to talk about things in more detail please call our Freephone Support Line on 0800 090 2309, or drop us a line via Web Chat: 

https://www.mariecurie.org.uk/help/support/marie-curie-support-line

Best Wishes

Clare

Marie Curie Support Line