Early onset Dementia and Pacemaker replacement. I don’t want to do it.

[bunnylovevol]

Hello, I am a 60-year-old female who has had a pacemaker for the past 15 years. I just got newly diagnosed with some form of dementia, my guess vascular. I live alone, I have no children, however, I do have older siblings, nieces, and nephews, etc. I was just given this diagnosis recently and also I’m at the point that I have to have my pacemaker battery changed out. I don’t want to do it! I don’t want to live the next 5 to 8 years with dementia, the drain on my family, and the medical system, and on myself. Has anyone else ever run into this situation with a young family member? I would rather live the last couple months of my life, happy and doing things I would like to do and let the pacemaker battery life run out. I’m not asking if whether I should do it or not, I’m just asking if anybody else has had family members go through this? How did you as a family emotionally handle it? How did the person affected with dementia in the early stages handle it? I have to let my doctor know soon. I was scheduled for the procedure before I found out about the new diagnosis of dementia.

Thank you.

 

[Grannie G]

Hello @bunnylovevol

I have not had experience of what you wish for yourself but hope you will be able to do what you want for your own peace of mind.

 

[bunnylovevol]

Hello @bunnylovevol

I have not had experience of what you wish for yourself but hope you will be able to do what you want for your own peace of mind.

Thank you…. I hope so too. I have not told my family yet. My poor parents are still alive in their upper 90’s, i know this will devastate them.

 

[Duggies-girl]

My dad had a pacemaker and I had to take him to have the battery checked, it turned out it was fine because he didn't really need a pacemaker (according to the nurse who checked it) and apparently the battery was good for a few more years.

Nobody can make you have a new battery @bunnylovevol it is entirely your choice. I don't think my dad ever really needed a pacemaker, he was given it after he collapsed (probably from stress) after my mum was admitted with a ruptured aortic aneurysm. They suspected a heart attack but I think poor dad was under an enormous amount of stress and it just caught up with him.

I hope you are able to make the right choice for you.

 

[bunnylovevol]

My dad had a pacemaker and I had to take him to have the battery checked, it turned out it was fine because he didn't really need a pacemaker (according to the nurse who checked it) and apparently the battery was good for a few more years.

Nobody can make you have a new battery @bunnylovevol it is entirely your choice. I don't think my dad ever really needed a pacemaker, he was given it after he collapsed (probably from stress) after my mum was admitted with a ruptured aortic aneurysm. They suspected a heart attack but I think poor dad was under an enormous amount of stress and it just caught up with him.

I hope you are able to make the right choice for you.

 

[bunnylovevol]

I am so sorry your mom, dad, and you went through such a difficult and sad time. So hard to see our loved ones suffer. I, unfortunately am dependent on mine. I am just going to try to enjoy what I can. Thank you for your support, I really do appreciate it.

 

[Banjomansmate]

My Banjoman was coming to the 10 years of the battery life of his pacemaker when he fell and broke his femur. His dementia deteriorated over the following months and he died about four months later. I was aware that there might be a difficult decision to make about the pacemaker and wondered if, as LPA for Health and Welfare, and with an Advance Directive that stated he wanted no proactive intervention should he have a terminal illness, I should come to the same conclusion as you have. Thankfully I didn’t have to do that but I can fully understand your thinking and if you were my family member I hope I would be able to support you with your choice, difficult though it might be.

 

[maggie6445]

@bunnylovevol , I'm sorry that you are now in this position. I can understand a little of how you must be feeling. My oH who has late mid stage dementia has been been having heart test , again,after years of heart issues.
It's likely he'll be offered a pacemaker as it was suggested yesterday ,if the results are as expected.

My oh saw my mum's dementia decline and always said he would stop heart meds if he got like her and allow a heart attack to take him He continues with meds because they are prescribed and I administer them , as he never made his wish official.

He isn't going to be able to decide any longer about a pacemaker and it will be me as his health LPA who will.

You are making a brave decision and I hope your family will support you in what ever you choose.

I hope I can make the right choice for my OH too.

I wish you and your family strength to be at peace with your decisions.x

 

[angelagail]

Hello Bunny,

I, too, am at the 'Early Diagnosis' stage.
I was diagnosed nearly 6 months ago & though I have family most of them live abroad so like you,
I live alone.

I totally understand your quandary re medical intervention to prolong life & am sure many of us have, are, or will, face similar issues but no-one can or will advise you what to do when faced with such decisions as we are all individuals & last I heard there are literally hundreds of forms/types of Dementia and so our experience & likewise, our response to it, is as different & varied as we are.

I can't advise/answer about your Heart options as that has to be your decision
but what I can tell you about is how I'm personally dealing with my own Memory Loss diagnosis...

After receiving the diagnosis in the form of a letter from the Consultant I had seen, there was also a referral for a scan which I declined as I'm Claustrophobic & prone to Anxiety Attacks,
plus I know myself well enough to I know that if I was given irrefutable proof I would decline rapidly.

Instead, I decided I would tell everyone I'd already told about my diagnosis when I was in shock, that now it's far more likely to be 'Fibrofog' as I've had Fibromyalgia for 13 years, so am no stranger to being befuddled & scatter-brained, which is absolutely true.

Then, having made contact with a Dementia Researcher who was kind enough to update me on the latest research, I started to empower & reclaim myself by putting into practice all the things I could do to enable me to live my best life, which crucially included increasing blood/oxygen flow by excercising, especially Aerobics, Resistance Training ie exercising whilst lifting/carrying weights (I started with a couple of tins of Baked Beans but have now got myself some small 2kg weights) which you can even do whilst sat watching TV & also, very crucially walking especially Speed Walking but am working on that, as I'm slowly upgrading from my usual languid stroll.
Plus, believe it or not, singing whilst doing any of these activities has shown great results in increasing blood flow/oxygen levels.

Basically, anything that increases Blood/Oxygen flow is great according to the latest research
but don't take my word for it, Google it & do the research for yourself.

Maybe you could also considering putting yourself forward to join in a research project
or Volunteering at an Alzheimers/Dementia shop/location/group
&/or join groups in your locality so you can interact with others who are in the same boat
but try to avoid calling it The Titanic. even if it does sometimes feel like we're on it.

What I'm saying is, as far as our short term memory issues etc go, the meds are good, are getting better all the time & will help.

Nevertheless, no problem is as important as your attitude to that problem is
ie Self help by being active & proactive in finding what will help you to live your best life is a positive option for you, as well as for everyone who is facing similar challenges.

Anyway, with the state of the world & what's happening in it right now,
none of us know if we'll be here next week or even tomorrow - so make the best of it
because that's all you can do, is to make the best of the time that has been given to you.

Yes, it might end badly & the Pessimist may be proved right in the end
but the Optimist has the better journey.

Onwards & upwards! Oh, and have a hug x

 

[Spottydog]

I totally understand where you are coming from but I would suggest having a chat with your doctor about any unpleasant symptoms you may get from not replacing the battery, such as shortness of breath, blackouts etc.

 

[Duggies-girl]

I was also very surprised at the amount of information that can be collected from a pacemaker. When I took dad for his battery check the technician waved a wand over his pacemaker that he had had for about 9 years and she said that it had only been used once, she told me the date and I said yes, that was when he was in hospital with delirium and he had had a heart attack. She also said that he had a very strong heart.

I am positive that my dad would have survived his heart attack even without the pacemaker, I don't think that he ever needed it.

 

[PeteMid]

Hello, I am a 60-year-old female who has had a pacemaker for the past 15 years. I just got newly diagnosed with some form of dementia, my guess vascular. I live alone, I have no children, however, I do have older siblings, nieces, and nephews, etc. I was just given this diagnosis recently and also I’m at the point that I have to have my pacemaker battery changed out. I don’t want to do it! I don’t want to live the next 5 to 8 years with dementia, the drain on my family, and the medical system, and on myself. Has anyone else ever run into this situation with a young family member? I would rather live the last couple months of my life, happy and doing things I would like to do and let the pacemaker battery life run out. I’m not asking if whether I should do it or not, I’m just asking if anybody else has had family members go through this? How did you as a family emotionally handle it? How did the person affected with dementia in the early stages handle it? I have to let my doctor know soon. I was scheduled for the procedure before I found out about the new diagnosis of dementia.

Thank you.

I was diagnosed with dementia over 5 years ago. I'm still going strong and envisage many more happy years.
For goodness sake get your shiny new pacemaker fitted and enjoy every single day as it comes.

 

[Boneking]

I pray that I get some other disease that takes me out before my dementia gets bad

 

[leny connery]

Hello, I am a 60-year-old female who has had a pacemaker for the past 15 years. I just got newly diagnosed with some form of dementia, my guess vascular. I live alone, I have no children, however, I do have older siblings, nieces, and nephews, etc. I was just given this diagnosis recently and also I’m at the point that I have to have my pacemaker battery changed out. I don’t want to do it! I don’t want to live the next 5 to 8 years with dementia, the drain on my family, and the medical system, and on myself. Has anyone else ever run into this situation with a young family member? I would rather live the last couple months of my life, happy and doing things I would like to do and let the pacemaker battery life run out. I’m not asking if whether I should do it or not, I’m just asking if anybody else has had family members go through this? How did you as a family emotionally handle it? How did the person affected with dementia in the early stages handle it? I have to let my doctor know soon. I was scheduled for the procedure before I found out about the new diagnosis of dementia.

Thank you.

 

[leny connery]

bottom line: it is your life, your choice. I would most likely do the same in your place. Who would choose a slow death, with no dignity , no memory for an extra 10 years?I would go out, have a blast, spend the money and enjoy life while I still have the capacity to do so. Good luck with it all. sending you love

 

[Jane3]

Hello, I am a 60-year-old female who has had a pacemaker for the past 15 years. I just got newly diagnosed with some form of dementia, my guess vascular. I live alone, I have no children, however, I do have older siblings, nieces, and nephews, etc. I was just given this diagnosis recently and also I’m at the point that I have to have my pacemaker battery changed out. I don’t want to do it! I don’t want to live the next 5 to 8 years with dementia, the drain on my family, and the medical system, and on myself. Has anyone else ever run into this situation with a young family member? I would rather live the last couple months of my life, happy and doing things I would like to do and let the pacemaker battery life run out. I’m not asking if whether I should do it or not, I’m just asking if anybody else has had family members go through this? How did you as a family emotionally handle it? How did the person affected with dementia in the early stages handle it? I have to let my doctor know soon. I was scheduled for the procedure before I found out about the new diagnosis of dementia.

Thank you.

I too am 60 and alone , I have just lost my mum to dementia. I would say that none of us ever know what is coming, you sound like a very switched on person and i am sure you can live a full life with a new battery and dementia especially if you plan ahead.
A plan is what you need and to live your life to the full both are within your grasp.
wishing you well, take care

 

[Shirleyblue]

Hello Bunny,

I, too, am at the 'Early Diagnosis' stage.
I was diagnosed nearly 6 months ago & though I have family most of them live abroad so like you,
I live alone.

I totally understand your quandary re medical intervention to prolong life & am sure many of us have, are, or will, face similar issues but no-one can or will advise you what to do when faced with such decisions as we are all individuals & last I heard there are literally hundreds of forms/types of Dementia and so our experience & likewise, our response to it, is as different & varied as we are.

I can't advise/answer about your Heart options as that has to be your decision
but what I can tell you about is how I'm personally dealing with my own Memory Loss diagnosis...

After receiving the diagnosis in the form of a letter from the Consultant I had seen, there was also a referral for a scan which I declined as I'm Claustrophobic & prone to Anxiety Attacks,
plus I know myself well enough to I know that if I was given irrefutable proof I would decline rapidly.

Instead, I decided I would tell everyone I'd already told about my diagnosis when I was in shock, that now it's far more likely to be 'Fibrofog' as I've had Fibromyalgia for 13 years, so am no stranger to being befuddled & scatter-brained, which is absolutely true.

Then, having made contact with a Dementia Researcher who was kind enough to update me on the latest research, I started to empower & reclaim myself by putting into practice all the things I could do to enable me to live my best life, which crucially included increasing blood/oxygen flow by excercising, especially Aerobics, Resistance Training ie exercising whilst lifting/carrying weights (I started with a couple of tins of Baked Beans but have now got myself some small 2kg weights) which you can even do whilst sat watching TV & also, very crucially walking especially Speed Walking but am working on that, as I'm slowly upgrading from my usual languid stroll.
Plus, believe it or not, singing whilst doing any of these activities has shown great results in increasing blood flow/oxygen levels.

Basically, anything that increases Blood/Oxygen flow is great according to the latest research
but don't take my word for it, Google it & do the research for yourself.

Maybe you could also considering putting yourself forward to join in a research project
or Volunteering at an Alzheimers/Dementia shop/location/group
&/or join groups in your locality so you can interact with others who are in the same boat
but try to avoid calling it The Titanic. even if it does sometimes feel like we're on it.

What I'm saying is, as far as our short term memory issues etc go, the meds are good, are getting better all the time & will help.

Nevertheless, no problem is as important as your attitude to that problem is
ie Self help by being active & proactive in finding what will help you to live your best life is a positive option for you, as well as for everyone who is facing similar challenges.

Anyway, with the state of the world & what's happening in it right now,
none of us know if we'll be here next week or even tomorrow - so make the best of it
because that's all you can do, is to make the best of the time that has been given to you.

Yes, it might end badly & the Pessimist may be proved right in the end
but the Optimist has the better journey.

Onwards & upwards! Oh, and have a hug x

What an uplifting reply. My husband was diagnosed with early Alzheimer’s in November 2023 and your approach has definitely encouraged me to take a fresh look and try to look forward with optimism. Thank you. 🙂I hope it has been just as supportive to Bunny.

 

[maggie6445]

Bunny hasn't been on this site since 20 April so sadly , won't have seen any responses since then.

 

[Alisongs]

bottom line: it is your life, your choice. I would most likely do the same in your place. Who would choose a slow death, with no dignity , no memory for an extra 10 years?I would go out, have a blast, spend the money and enjoy life while I still have the capacity to do so. Good luck with it all. sending you love

So wise.