Full time carers, how do you cope?

[Alisongs]

If I fall ill or taken to hospital my mum will be moved to residential care, I am aware of it. It is my choice to look after her and until recently I have been managing very well. I thought I would continue looking after her as long as I can provide adequate care and I still can, I just find it hard to live under so much stress with such little help from other services. My dad is in a care home and until recently we used to spend 2-3 days a week visiting him there. He doesn’t have dementia but most of the residents do and I know what their life is like. Most of the time they sit in the big room watching TV or if the weather is nice in summer only they can sit outside, that’s it. My mum doesn’t speak English and requires daily walks in any weather. She will be deprived of that and she won’t be able to take part in any activities. With her challenging behaviour she will probably be sedated and left in her room sleeping all day and night. No way she will be getting 1:1 care in a care home. Communication is so important for patients with dementia and my mum won’t even be able to communicate with anyone. I cannot imagine a life like this for her at least now when she can still have some quality of life at home. I just wanted to hear from somebody who have found themselves in a similar situation and still coping and managing.

@Annamalina. You may not be keen but your mum needs other people and activities for her own wellbeing as much as you do. There are Dementia cafes you can both go to, some Lunch Clubs and Day Centres will take Mum with or without you, activities such as Exercise or Singing for older people/dementia victims. English not required, just the ability to attend or to watch or to listen to the activity. It's all communication. There may even be other helpers or attendees who speak your mums first language. You sound completely overwhelmed by all the responsibility you have taken on. My foreign grandad spent autumn and winter with us in England every year. He had no English, and no dementia, but would go and sit on a nearby bench with a group of English oldies every day. They nodded, smiled, looked at the newspapers, pointed at things, shared their sweets, looked up at the weather or at people passing by, or fed the birds and patted passing dogs and cats. Communicating and making friends does not need the same language. Get mum out there, and the stimulation may improve her mood. And you will be able to talk to her about it

 

[Annamalina]

@Annamalina. You may not be keen but your mum needs other people and activities for her own wellbeing as much as you do. There are Dementia cafes you can both go to, some Lunch Clubs and Day Centres will take Mum with or without you, activities such as Exercise or Singing for older people/dementia victims. English not required, just the ability to attend or to watch or to listen to the activity. It's all communication. There may even be other helpers or attendees who speak your mums first language. You sound completely overwhelmed by all the responsibility you have taken on. My foreign grandad spent autumn and winter with us in England every year. He had no English, and no dementia, but would go and sit on a nearby bench with a group of English oldies every day. They nodded, smiled, looked at the newspapers, pointed at things, shared their sweets, looked up at the weather or at people passing by, or fed the birds and patted passing dogs and cats. Communicating and making friends does not need the same language. Get mum out there, and the stimulation may improve her mood. And you will be able to talk to her about it

Thank you for writing to me. My mum has lived with me for more than 2 years and until 5 weeks ago her life had been very active and mentally stimulating. She was still capable of walking on her own for 3-4 hours chatting to neighbours and dog owners, absence of English was never an issue. Unfortunately, what’s happening at the moment is very rapid deterioration of Alzheimer’s and non- drug methods are not working anymore. It is more serious than moods swings. From being a psychically fit 84 year old by my mum can hardly walk from her bedroom into the kitchen. She has lost at least 10 kgs as she hardly eats anything. We are talking about a period of only 5 weeks. I never thought it would be possible to suffer so much physically because of a mental illness. She has now started an anti-psychotic drug and I am hoping it can stop her psychosis. Once she is calmer I will do my best to return her to a normal life of going out and socialising. But yes, you are right I am not keen on locking her up in a care home while she still can have a better quality of care and life at home. Her progress will now be monitored by a community nurse which is a huge relief for me. I hope the new medication will help.

 

[Annamalina]

🧡💛❤️💚💙💜🖤🤎

Thank you 🙏

 

[Alisongs]

Thank you for writing to me. My mum has lived with me for more than 2 years and until 5 weeks ago her life had been very active and mentally stimulating. She was still capable of walking on her own for 3-4 hours chatting to neighbours and dog owners, absence of English was never an issue. Unfortunately, what’s happening at the moment is very rapid deterioration of Alzheimer’s and non- drug methods are not working anymore. It is more serious than moods swings. From being a psychically fit 84 year old by my mum can hardly walk from her bedroom into the kitchen. She has lost at least 10 kgs as she hardly eats anything. We are talking about a period of only 5 weeks. I never thought it would be possible to suffer so much physically because of a mental illness. She has now started an anti-psychotic drug and I am hoping it can stop her psychosis. Once she is calmer I will do my best to return her to a normal life of going out and socialising. But yes, you are right I am not keen on locking her up in a care home while she still can have a better quality of care and life at home. Her progress will now be monitored by a community nurse which is a huge relief for me. I hope the new medication will help.

Thanks for explaining. The speed of deterioration can be terrifying and hard to take in. For your mum too. Wishing you both all the best