Dementia is stealing away my hero dad and I feel useless
Dear Lesley,
My lovely dad is 73 years old and for the past four years has been suffering from dementia. He has always been my hero and my absolute closest friend but now the dementia is robbing him of mind and body.
He’s confused, and often angry and upset, and I just want to scoop him up and take him home even though I know I can’t.
He has problems with continence, coordination and even feeding himself some days. Watching him just getting worse and worse is killing me – I feel useless as I can’t do anything to make him better. I am now suffering from depression myself.
My mum is 61 and has finally admitted that she cannot cope with dad anymore and I’ve decided to move my family to be closer to my dad and help in his long term care but I don’t know what else to do.
Can you help?
Lesley says:
Hello
What an incredibly sad situation. I do feel for you. It’s always hard to watch our parents grow older and more frail but dementia is a particularly cruel and relentless disease. Anyone reading this who has a family member with dementia will relate to what you are saying.
Accepting that there’s no easy fix
You may have heard dementia being called ‘the long goodbye”. I think part of your depression is about slowly losing your dad who you describe as your closest friend. I do understand how seeing your “hero” losing his mental and physical abilities makes you feel like a part of you is dying as well.
You desperately want to protect him and make him better again. But sadly, you can’t and this makes you feel powerless. Your mum must be feeling pretty similar and you must have concerns about her too.
You ask what you can do in this situation. It seems like you’re already pretty involved, making regular visits and have made the decision to move closer to your parents. So you’re already doing a great deal.
I sense that what you mean is: how can I fix this problem? It’s natural that you want to find answers and solve problems and I bet you’re normally someone who is really good at doing that. But unfortunately in this case I think the first step is to accept that there is no easy “fix” that will make your father better.
That said, I do think that there are many things that you can do to make the situation a little more manageable for you and your family. Those things revolve around getting help, both practical and emotional, for yourself and for your mum and trying to think ahead about what happens in the future.
Looking for outside support
Perhaps yours is a family with traditional values who believe you should all be looking after each other and not asking for outside help? That’s commendable, but it sounds like you are out of your depths now and need some professional help.
Your local authority has an obligation to come and do an assessment of your dad and see what help he is entitled to. And whilst councils vary, there is a lot of help out there from information and advice, through to having carers come to the house and take on some of the care work.
And your mum might be entitled to some help as well, as his carer. Things must be getting pretty bad for her if she says that she can’t cope.
Planning ahead
You say your father is getting worse and worse so now is the time to do a bit of thinking ahead. I don’t know how long it will take you to move house but often it can take several months – and moving a family is stressful in itself.
Have you thought about how things will work once you have moved? Will it be possible for your family to provide full-time care for your dad? What about work and other commitments?
Being a carer can involve “personal care” (washing, toileting etc.), providing medication, lifting and carrying as well as emotional resilience. I wonder if you are in a position to take all this on? And what impact will it have on your family life if you do?
Tackling depression
Finally, you say that you are suffering from depression. I wonder if this is been diagnosed by the GP? If not, it would certainly be worth a visit. You will be better able to help your dad, and your mum, if you are feeling strong yourself. It’s very sad that your father has dementia but I’m sure if he were in a position to advise you now he would say that he doesn’t want you to go under with worry about him.
What struck me most about your email was that you said that this situation is “killing” you. That’s a very strong word and I think you need to be aware how much your dad’s decline has taken over your life. I do believe you need to talk about how you feel, start grieving for the father you have lost and find ways to begin “letting go”.
If you feel it would help to talk it through with someone who will listen, understand and not “judge” you, do give me a call or ask your GP what support is available for you.
Summing it all up, I think you must think about getting practical help for your dad, for your mum and emotional support for yourself. This situation could go on for quite some time so now is the time to start tackling it and making some practical plans for the future. But it’s a really tough one which, sadly, many people today are going through and I wish you the best of luck on your sad and difficult journey.
Lesley
Find out more about local authority assessments
How can I coordinate my parent’s care?
A reader’s story of dementia and her mum
Dr Lesley Trenner is an Ageing Parent specialist with extensive qualifications and experience in life coaching. Lesley provides one-to-one help for people who are struggling to balance work and care, or cope with mid-life, family and career challenges. Sessions are available face-to-face (London) or on the phone. Email Lesley or call 07919 880 250 for a free introductory chat.
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My Father has dementia and has just been diagnosed with lung cancer. I know just how you feel. I was very close with my Father but now he blames my for not getting him home. He thinks he can look after himself . He can’t he has been in hospital 4 times this year. He can’t remember any of this and gets angry with me for not helping him. Every thing I do is not good enough and tells me I am his son and should sort this out for him. It hurts but you must try to remember that’s… Read more »
Many thanks for your very helpful and supportive comment Charles. It’s immensely sad that anger is often is tied so closely with dementia. All my best wishes for you and your father. Kathy, editor at When They Get Older