Hi Everyone, my dad has had mild cognitive impairment for just over a year (diagnosed) and has just been given a diagnosis of Alzheimers. Although he has been symptomatic for a while I am struggling to come to terms with the diagnosis. I myself have a family and three children and we don't live very near to my parents. My dad is 64 and my mum has retired at 63 to be his carer. I feel very out of control as they often don't tell me things until after the event, such as crises and the results of consultant appointments. I am 37. Hope I've put this in the right place.
Feeling overwhelmed
- Thread starter theonlooker
- Start date
Hello there.My dad was formally diagnosed at 68 but signs were there earlier.He has just at 75 gone into a care home but he had several good years with good quality of life even after diagnosis. As he has a heart condition,he wasn't on any meds for the dementia but still, as I say, had quality of life.Equally I have friends whose relatives could have the medication and they are still living relatively well in their own homes. If your parents aren't sharing everything maybe it's because they can see you have your own family and there is a limit to what help you can give, especially if you are far away. Personally I kept away from articles/groups which dealt more with end stages but everyone is different.There is a lot of information out there - if that helps you. I am sorry I can't say much more but a diagnosis is upsetting and yet also is the point at which support/help can be found. I just wanted to reply to send some support .
Hello, welcome to Talking Point. I am sorry to hear about your dad, especially as he is so young. I would imagine that as Mum and Dad are so young, they feel they can cope with everything at the moment and don’t need you to be too involved yet. As the previous poster said, you have a young family and will be limited with any practical help you can offer.
I can understand how upsetting it is for you to feel left out though. My family is in almost the same situation...my daughter is your age, lives nearly 200 miles away and has a young family. She has helped me with research though. When I neeed to know about benefits...she found the facts for me. She helped me complete my husband’s tax self assessment. Maybe you can help Mum and Dad in ways like this?
And it might just be that they are wanting to be independent and make their own decisions. Although being around 60 sounds old to someone in their thirties...it doesn’t feel it from this end! I am used to making my own decisions...to being ‘in control’ and I wouldn’t want to abdicate that responsibility!
Continue to offer moral support, just to let your parents know that you are there if they do need anything.
Hello, @theonlooker, and welcome you to Talking Point. I'm sorry to hear about your dad's diagnosis, and that you've needed to come and find us.
You are in the right place, no worries!
My mother is 75 and has middle to later stage Alzheimer's. She was diagnosed with the dementia not quite four years ago, but in hindsight, definitely had it for some time before that, at least 2-3 years and probably quite a bit longer.
Even though I knew something was wrong with my mother, and her GP had said "maybe MCI?" I was startled and shocked by the Alzheimer's diagnosis and I remember that feeling all too well.
I also remember, again all too clearly, the feeling of being overwhelmed that you describe. It was such a shock, there was so much going on (she was in hospital and I needed to find a care home for her ASAP), and I knew nothing about dementia and had no idea where to turn.
I also found it a very, very steep learning curve in the beginning.
What did help me was getting some clear information.
A place you might start is here on the Alzheimer's Society website; they have a lot of good information and fact sheets that I have found clearly written and helpful.
You could look here for some general information about dementia: https://www.alzheimers.org.uk/info/20007/types_of_dementia/1/what_is_dementia
And then maybe here, for info on the types of dementia: https://www.alzheimers.org.uk/info/20007/types_of_dementia
(Before all of this with my mother, I didn't even know there are different types of dementia. I knew nothing, nothing at all. Don't feel discouraged, many of us start from the beginning.)
And there is a lot of other information there as well.
I also found, and still find, it helpful to just read through a lot of threads here on TP. Current ones, past ones, you name it, I've read it. Probably not for everyone, but it helped me.
Please don't hesitate to ask questions or for clarification about anything.
Feeling out of control seems to be a usual reaction to dealing with dementia.
If it's possible for you to have a conversation with your parents, or privately with your mother, and ask to be more in the loop with communication, perhaps you might consider that.
Unfortunately this is a disease where things get worse, so at some point, your mother, although she may prefer to do things herself or on her own, will need some help. If there's a way to gently set the stage for that and indicate to your parents that you want to be helpful and supportive, that's great. Being the only hands on caregiver for someone with dementia 24/7, forever, with no help, eventually takes its toll on the carer. We are only human.
Some things can be handled even from a great distance: online banking is a lifesaver, for example, or ordering supplies and groceries online, researching various topics, or even just regular phone calls or emails or Skype sessions.
Don't forget that you will need support as well, for you. Maybe a carers' group in your area (it can be immensely helpful to be in a room full of people who understand what you're going through), or someone to talk to, or whatever you need, but don't neglect yourself in the process.
Some good advice I often hear is that caring for someone with dementia is a marathon, not a sprint.
Dementia will eat up all the time and energy you throw at it and be greedy for more and that's true for your mum as well as you.
Again, I'm sorry to have to say it, but welcome to TP and hope there will be support and advice for you here. It's been a lifesaver for me. Best wishes to you and your family.
You are in the right place, no worries!
My mother is 75 and has middle to later stage Alzheimer's. She was diagnosed with the dementia not quite four years ago, but in hindsight, definitely had it for some time before that, at least 2-3 years and probably quite a bit longer.
Even though I knew something was wrong with my mother, and her GP had said "maybe MCI?" I was startled and shocked by the Alzheimer's diagnosis and I remember that feeling all too well.
I also remember, again all too clearly, the feeling of being overwhelmed that you describe. It was such a shock, there was so much going on (she was in hospital and I needed to find a care home for her ASAP), and I knew nothing about dementia and had no idea where to turn.
I also found it a very, very steep learning curve in the beginning.
What did help me was getting some clear information.
A place you might start is here on the Alzheimer's Society website; they have a lot of good information and fact sheets that I have found clearly written and helpful.
You could look here for some general information about dementia: https://www.alzheimers.org.uk/info/20007/types_of_dementia/1/what_is_dementia
And then maybe here, for info on the types of dementia: https://www.alzheimers.org.uk/info/20007/types_of_dementia
(Before all of this with my mother, I didn't even know there are different types of dementia. I knew nothing, nothing at all. Don't feel discouraged, many of us start from the beginning.)
And there is a lot of other information there as well.
I also found, and still find, it helpful to just read through a lot of threads here on TP. Current ones, past ones, you name it, I've read it. Probably not for everyone, but it helped me.
Please don't hesitate to ask questions or for clarification about anything.
Feeling out of control seems to be a usual reaction to dealing with dementia.
If it's possible for you to have a conversation with your parents, or privately with your mother, and ask to be more in the loop with communication, perhaps you might consider that.
Unfortunately this is a disease where things get worse, so at some point, your mother, although she may prefer to do things herself or on her own, will need some help. If there's a way to gently set the stage for that and indicate to your parents that you want to be helpful and supportive, that's great. Being the only hands on caregiver for someone with dementia 24/7, forever, with no help, eventually takes its toll on the carer. We are only human.
Some things can be handled even from a great distance: online banking is a lifesaver, for example, or ordering supplies and groceries online, researching various topics, or even just regular phone calls or emails or Skype sessions.
Don't forget that you will need support as well, for you. Maybe a carers' group in your area (it can be immensely helpful to be in a room full of people who understand what you're going through), or someone to talk to, or whatever you need, but don't neglect yourself in the process.
Some good advice I often hear is that caring for someone with dementia is a marathon, not a sprint.
Dementia will eat up all the time and energy you throw at it and be greedy for more and that's true for your mum as well as you.
Again, I'm sorry to have to say it, but welcome to TP and hope there will be support and advice for you here. It's been a lifesaver for me. Best wishes to you and your family.
Hi 'theonlooker' I cannot add to the excellent advice you have been given, so will content myself with saying 'Welcome to TP'.
@theonlooker
Hi, sorry you’ve joined TP.
I and many others here will empathise with how you are feeling, it’s heartbreaking and knocks you for six and more when you learn of the diagnosis.
As is said time is the healer.
My Dad is super independent and believes he’s has everything covered for Mum who has dementia. He so does not.
You’ll find this forum the best source of info and i’ve found I can be prepared and learn so much.
Perhaps help Mum and Dad with power of attorney, wealth and health, attendance allowance do as early as you can, make life as easy as you can.
Get family on side now so your Mum is well supported as the main carer.
Keep posting here, you’ll meet wonderful huge hearted knowledgeable people.
Warm wishes to you and yours. X
Hi, sorry you’ve joined TP.
I and many others here will empathise with how you are feeling, it’s heartbreaking and knocks you for six and more when you learn of the diagnosis.
As is said time is the healer.
My Dad is super independent and believes he’s has everything covered for Mum who has dementia. He so does not.
You’ll find this forum the best source of info and i’ve found I can be prepared and learn so much.
Perhaps help Mum and Dad with power of attorney, wealth and health, attendance allowance do as early as you can, make life as easy as you can.
Get family on side now so your Mum is well supported as the main carer.
Keep posting here, you’ll meet wonderful huge hearted knowledgeable people.
Warm wishes to you and yours. X
Thank you so much everyone for your warm and kind welcome and your advice and support. I welled up reading this thread I am so grateful to have found somewhere where I feel in good hands so to speak. I will definitely be putting in to place the very helpful suggestions. Thank you again, what a lovely community x
Welcome from me too. I'm the same age as your mum and if I were in her shoes, I suspect I'd be doing the same, trying to shield you and your young family from the day to day stuff.
One way you might be able to help is to get clued up on how to access support or information well in advance, and the AS website and indeed this forum is a great way to start. The more you know, the better a position you will be in to offer practical advice when your mum needs it...and she will, as it's a lonely road as a carer, trying to do it yourself. Once she sees you can discuss things knowledgely with her, she might start to open up.
Would there be any benefit in persuading your mother to sign up to Talking Point too?
One way you might be able to help is to get clued up on how to access support or information well in advance, and the AS website and indeed this forum is a great way to start. The more you know, the better a position you will be in to offer practical advice when your mum needs it...and she will, as it's a lonely road as a carer, trying to do it yourself. Once she sees you can discuss things knowledgely with her, she might start to open up.
Would there be any benefit in persuading your mother to sign up to Talking Point too?
Hello and welcome from me too theonlooker xx
As usual on TP, You've had wonderful advice, so now you know you are so in the right place to post.
I can't really add much to what's been offered but I would recommend eating up all the info you can get your hands on when you have the time.
Also, when you call your parents, don't ask if there's anything you can do, more along the lines of what can I do to help is much appreciated....as long as you have time to provide the help.
I'm sorry you had to join TP, but very happy you found it.
Good luck and best wishes xxx
As usual on TP, You've had wonderful advice, so now you know you are so in the right place to post.
I can't really add much to what's been offered but I would recommend eating up all the info you can get your hands on when you have the time.
Also, when you call your parents, don't ask if there's anything you can do, more along the lines of what can I do to help is much appreciated....as long as you have time to provide the help.
I'm sorry you had to join TP, but very happy you found it.
Good luck and best wishes xxx
Hi Chemmy, thank you for your words. I have suggested it and to my brother and sister too, and my brother got a bit cross with me. I've been told to stop sending links to them and basically back off. My mum isn't particularly technical and has so much on her plate with my dad who is still wanting to be very independent and is a bit like an unruly toddler who thinks he can do everything but then isn't quite able to. I just don't understand not wanting to talk about things, suppressing emotions is the worst thing you can do in my experience. X
Hi- I am one of four siblings. I and two others are relatively local to my parents. However for the first few years of the diagnosis, 2 of them refused to acknowledge it. I guess it is what they call " denial." I was exaggerating or somehow " causing a fuss". Even now they find it very difficult to visit because it's " depressing" or they have " lots to do.". As if neither of those things are felt by me! I have found that a dementia diagnosis can be very divisive in families so through absolute gritted teeth, I have just plodded on and done what I can do and I cannot be responsible for the reactions of others. I have tried to keep family communication lines open even if strained so that we can all be there when the worst of times comes. However as I said before, for you, your dad may have yet many years of quality of life. Try not to despair. One day and a time- one week at a time etc. x
I had ten years of sole responsibility for my mother during her long journey with Alzheimer's, yet three years after she died, I hit the same problem as you with my OH and his sisters, when it became apparent their mum had dementia too. I found I was always two steps ahead of them in wanting to make plans / be prepared, and I had to learn to back off.
It's frustrating when you want to help and you are rebuffed, but there's nothing you can do about that other than respect their wishes. Like me, you may well have to wait to be asked for help, and that is SO difficult. In the interim, do your homework, so that when they do need information, you have it to hand.
