the worst condition

[cheyelise]

I believe that dementia is one of the absolute worst conditions that anyone can be diagnosed with. Although not normally physically painful it is obviously extremely mentally harmful to the subject but also to the people around them. I am currently living with my father who has early onset dementia and there's no way that I could've seen this coming.
Sometimes I feel like dementia is the most horrific disease because in a way, as a family member or friend of the person, you have to cope with the fact that your family member or friend is not, and never will be, the person that they once were. You're forced to live with the metaphorical mourning of their past existence because that person is now completely different.
This experience has not only given me a whole new outlook on life but its also made me scared. Scared of what could happen tomorrow, or in a few days, or in a month, because every single day is different and comes with a new story to tell. Scared of how quickly it is going to progress. Scared of how I'm going to cope when it inevitably gets worse than it already is.
I am coping with my situation, but I wanted to rant on here since I know someone will feel the same way.

 

[marionq]

I believe that dementia is one of the absolute worst conditions that anyone can be diagnosed with. Although not normally physically painful it is obviously extremely mentally harmful to the subject but also to the people around them. I am currently living with my father who has early onset dementia and there's no way that I could've seen this coming.
Sometimes I feel like dementia is the most horrific disease because in a way, as a family member or friend of the person, you have to cope with the fact that your family member or friend is not, and never will be, the person that they once were. You're forced to live with the metaphorical mourning of their past existence because that person is now completely different.
This experience has not only given me a whole new outlook on life but its also made me scared. Scared of what could happen tomorrow, or in a few days, or in a month, because every single day is different and comes with a new story to tell. Scared of how quickly it is going to progress. Scared of how I'm going to cope when it inevitably gets worse than it already is.
I am coping with my situation, but I wanted to rant on here since I know someone will feel the same way.

You have described the situation very eloquently. There are a lot of us who become experts in this subject we wish we knew nothing about. Please rant, discuss, share whenever you want because we learn from each other. This is at times a brutal, frightening, maddening, soul destroying illness and there is no denying that.

However many of us have found ways of dealing with it or taken steps for a different kind of care when we can no longer deal with it ourselves.

I will never ever think I know better than a carer as each case is different but sometimes I can help and you will be able to do that too as there are other young people on the forum.

Good wishes.

 

[cheyelise]

You have described the situation very eloquently. There are a lot of us who become experts in this subject we wish we knew nothing about. Please rant, discuss, share whenever you want because we learn from each other. This is at times a brutal, frightening, maddening, soul destroying illness and there is no denying that.

However many of us have found ways of dealing with it or taken steps for a different kind of care when we can no longer deal with it ourselves.

I will never ever think I know better than a carer as each case is different but sometimes I can help and you will be able to do that too as there are other young people on the forum.

Good wishes.

thank you, this means a lot.

 

[Philbo]

Hi cheyelise

I agree with marionq that you've expressed very clearly, the angst, concerns and heartache that all of us dealing with this terrible condition have to endure.

The only reassurance I can offer (as someone who cares for my wife), is that I have surprised myself as to just how much I have learned to cope with this role, as it has progressed over the last 4+ years. Largely assisted by this wonderful forum, I have continually got past initial feelings of utmost despair, helplessness and panic, to developing or adopting coping strategies (albeit some by trial and error).

Although you have to try and plan ahead, I find that it's often better to deal with the day-to-day situations and not focus too much on the what-iffs or what-nexts.

Your dad is very lucky to have you supporting him, so well done and stay strong.

Kind regards
Phil

 

[acramanda]

I believe that dementia is one of the absolute worst conditions that anyone can be diagnosed with. Although not normally physically painful it is obviously extremely mentally harmful to the subject but also to the people around them. I am currently living with my father who has early onset dementia and there's no way that I could've seen this coming.
Sometimes I feel like dementia is the most horrific disease because in a way, as a family member or friend of the person, you have to cope with the fact that your family member or friend is not, and never will be, the person that they once were. You're forced to live with the metaphorical mourning of their past existence because that person is now completely different.
This experience has not only given me a whole new outlook on life but its also made me scared. Scared of what could happen tomorrow, or in a few days, or in a month, because every single day is different and comes with a new story to tell. Scared of how quickly it is going to progress. Scared of how I'm going to cope when it inevitably gets worse than it already is.
I am coping with my situation, but I wanted to rant on here since I know someone will feel the same way.

Cheyelise,

I myself completely agree and can relate to what you are feeling. My mother we feel sure has some sort of dementia that has been progressing for nearly 5 years. It started with her language and not being able to think of words to not being able to express her thoughts hardly at all. I am 36 and my mom is now 62. I feel devastated, hopeless, and can barely carry on with my life. I find it hard to go to work, socialize with my friends, or even clean my house. I was on antidepressants for a while because of all this but have now had to stop since my husband and and I are now trying for a baby.

I would appreciate any ideas on how to cope with this situation. I feel there is no light for me and me family at the end of the tunnel. My mother has had 2 MRI's and has a neuropsychologist appointment on November 6. Even though I know it's dementia the daunting feeling of actually being diagnosed and the thought of how my family will move forward is beyond terrifying. I miss my old mom and all the conversations we used to have. I just don't feel any joy in anything in life anymore...

 

[cheyelise]

Hi cheyelise

I agree with marionq that you've expressed very clearly, the angst, concerns and heartache that all of us dealing with this terrible condition have to endure.

The only reassurance I can offer (as someone who cares for my wife), is that I have surprised myself as to just how much I have learned to cope with this role, as it has progressed over the last 4+ years. Largely assisted by this wonderful forum, I have continually got past initial feelings of utmost despair, helplessness and panic, to developing or adopting coping strategies (albeit some by trial and error).

Although you have to try and plan ahead, I find that it's often better to deal with the day-to-day situations and not focus too much on the what-iffs or what-nexts.

Your dad is very lucky to have you supporting him, so well done and stay strong.

Kind regards
Phil

You're completely right about having to focus on the daily situations instead of the situation as a whole, and I think my family and I are starting to learn that after living with this for a couple years. Saying that, I think as a teenager its in my DNA to overthink and get myself into a mess sometimes and then get over it, but I'm pretty sure that's normal.

Thank you for your kind words, you seem to be coping extremely well so I hope that you can continue to do that, for both your wife and yourself.

Best wishes,
Cheyenne

 

[cheyelise]

Cheyelise,

I myself completely agree and can relate to what you are feeling. My mother we feel sure has some sort of dementia that has been progressing for nearly 5 years. It started with her language and not being able to think of words to not being able to express her thoughts hardly at all. I am 36 and my mom is now 62. I feel devastated, hopeless, and can barely carry on with my life. I find it hard to go to work, socialize with my friends, or even clean my house. I was on antidepressants for a while because of all this but have now had to stop since my husband and and I are now trying for a baby.

I would appreciate any ideas on how to cope with this situation. I feel there is no light for me and me family at the end of the tunnel. My mother has had 2 MRI's and has a neuropsychologist appointment on November 6. Even though I know it's dementia the daunting feeling of actually being diagnosed and the thought of how my family will move forward is beyond terrifying. I miss my old mom and all the conversations we used to have. I just don't feel any joy in anything in life anymore...

I of course completely understand how you're feeling and I know how daunting it can be to finally have a diagnosis. I think we, as humans, tend to play things off to make them seem better in our heads, so actually having an official label put on something is the worst thing imaginable sometimes.
Me and my family have somehow managed to move around the label and in some ways use it to empower us as a family, because we are slowly but surely learning to cope with it, but that is easier said than done.

I am guessing that you don't live with your mother so you probably worry about how she is doing when you're not with her. I think that the hardest but most important thing to come to terms with is the fact that we can't do much to stop the progression and we therefore have to enjoy as many moments spent with the person as we can. Although they're obviously not the same person and that is inevitably going to be heart-breaking, I think its important to treat them in the same manner that you would have before. Start conversations, be patient and let them know that you're there for them.

I would also recommend getting yourself someone to talk to if you think that would help you in any way. I have really benefited from seeing a counsellor once every month or so. It's nice to have someone to talk at, knowing that they will keep it confidential and of course offer advice where they can.

Sending you the best wishes possible, I hope that this helped in some way even though I'm only a random teenager on some forum.
Cheyenne

 

[Shellb]

I believe that dementia is one of the absolute worst conditions that anyone can be diagnosed with. Although not normally physically painful it is obviously extremely mentally harmful to the subject but also to the people around them. I am currently living with my father who has early onset dementia and there's no way that I could've seen this coming.
Sometimes I feel like dementia is the most horrific disease because in a way, as a family member or friend of the person, you have to cope with the fact that your family member or friend is not, and never will be, the person that they once were. You're forced to live with the metaphorical mourning of their past existence because that person is now completely different.
This experience has not only given me a whole new outlook on life but its also made me scared. Scared of what could happen tomorrow, or in a few days, or in a month, because every single day is different and comes with a new story to tell. Scared of how quickly it is going to progress. Scared of how I'm going to cope when it inevitably gets worse than it already is.
I am coping with my situation, but I wanted to rant on here since I know someone will feel the same way.

I know exactly how you are feeling my mum was diagnosed only yesterday at aged 64 . The change in her has been over the last few years .
My mum lives with my dad who I worry won't be able to cope . I am so scared too I'm scared of how long it will take to progress and even though she isn't the same person she was 2 years ago she is still able and conversational to a point . I just need to make memories with her while we still can . I dread the future for us lol . Like you say it's such a cruel disease.
Thinking of you and it's good to know that we are not alone

 

[cheyelise]

I know exactly how you are feeling my mum was diagnosed only yesterday at aged 64 . The change in her has been over the last few years .
My mum lives with my dad who I worry won't be able to cope . I am so scared too I'm scared of how long it will take to progress and even though she isn't the same person she was 2 years ago she is still able and conversational to a point . I just need to make memories with her while we still can . I dread the future for us lol . Like you say it's such a cruel disease.
Thinking of you and it's good to know that we are not alone

Best wishes to you and your family, I hate that this disease affects so many people - remember you're never alone!!

 

[Shellb]

Best wishes to you and your family, I hate that this disease affects so many people - remember you're never alone!!

I kno thankyou that means so much , you take care too

 

[lubyloo]

Best wishes to you and your family, I hate that this disease affects so many people - remember you're never alone!!

No you're not alone - I'm here too- my husband was diagnosed 2014, and up until now it has gone pretty slowly and manageable, but now we are at the stage when I KNOW he has AD, and I am really losing him to become someone else. I HATE it. Oh Lord please find a cure!

 

[Whisperer]

Your words very intelligently sum up how I feel at times. As the typical male I can write a technical report but fail totally to describe disturbing thoughts and emotions as well as you did. The hardest thing I find is a personal fear I will fail to cope and the not ever being able to know how events will gradually develop. As time passes I appreciate what I now know and where I started are two very different places. We would all wish not to know any of it and for this terrible condition not to be real. Life before we stumbled onto the caring role was very different. Those who are not directly involved sometimes think they know better, our loved one changes in front of us in ways that are hard to come to terms with. However on this forum I have read words from many wise people. They did not ask for the role, their efforts are undervalued by many who lack knowledge and the demands they face emotionally are high. I will not meet them face to face and yet strangely I feel lucky to “know them over the net”. I no longer feel so isolated having found this new home, where good ideas flow, support is offered freely and much can be learnt. Please stay positive and believe in your capacity to develop the required skills in the future. Above all else be gentle with yourself. Best wishes