I am not sure how appropriate it is to talk of such issues, though this might help others to become better caregivers and become more aware of the current state of the Alzheimer epidemic.
I am trying to cope with this loss and I think it might be especially helpful if I could give an asynchronous description of what happened. In this way any caregiving mistakes that I made could be assessed in light of the information that was then available to me. I did not correctly interpret all the signs, so I will be very grateful if those on the forum can make comments as I add details.
As a starting point for the narrative, one morning I noticed that my loved one had rapid hyperventilation, with approximately 77 % oxygen saturation and I am not completely sure but I believe at the same time had a low pulse rate of perhaps 50-60 bpm.
Our Beloved Loved One has passed away
Re: Our Beloved Loved One has passed away
I'm so sorry, {{{J11}}} You were an amazing caregiver and worked tirelessly to do all you could. I have been in awe of your determination on this journey. I'm sending lots of love and good energy to you and all of your family. XO
Re: Our Beloved Loved One has passed away
Juliegee, thank you so much.
Some people are good at receiving love and hugs from others, me not so much.
It feels like life has become an eternal mourning.
On top of the dominant Alzheimer's in my family there appears to be several other interesting cognitive challenges including something similar to obsessive compulsive trait, language disorder and perhaps a shadow syndrome of autism. We are still in
the pre-genetics age, so Pandora's box is not yet fully open. We should know soon. The obsessive compulsiveness trait is making its presence known to me now. Everyone (including those with professional caregiving/nursing experience) has told me that the care received by our loved one has been quite exceptional: I want to have done better. This is the everlasting whisper that those with obsessive tendencies always hear, nothing that has ever happened in my life has ever changed this inner voice.
Yet, for me even though the dementia doctor considered the dementia hopeless 4 years ago, I still feel like I could have done a better job. Our loved one's mother had the exact same presentation of dementia and lived 4 more years than our loved. I feel like I have failed at the most important responsibility of my life. This thread perhaps could help others with the numerous difficulties that I was coping with and gain insight into how they might do better than I have done.
Some people are good at receiving love and hugs from others, me not so much.
It feels like life has become an eternal mourning.
On top of the dominant Alzheimer's in my family there appears to be several other interesting cognitive challenges including something similar to obsessive compulsive trait, language disorder and perhaps a shadow syndrome of autism. We are still in
the pre-genetics age, so Pandora's box is not yet fully open. We should know soon. The obsessive compulsiveness trait is making its presence known to me now. Everyone (including those with professional caregiving/nursing experience) has told me that the care received by our loved one has been quite exceptional: I want to have done better. This is the everlasting whisper that those with obsessive tendencies always hear, nothing that has ever happened in my life has ever changed this inner voice.
Yet, for me even though the dementia doctor considered the dementia hopeless 4 years ago, I still feel like I could have done a better job. Our loved one's mother had the exact same presentation of dementia and lived 4 more years than our loved. I feel like I have failed at the most important responsibility of my life. This thread perhaps could help others with the numerous difficulties that I was coping with and gain insight into how they might do better than I have done.
Re: Our Beloved Loved One has passed away
J11, nothing is more stressful than caring for a family member with dementia. Stress definitely exacerbates OCD. When everything in your life is out of control, it’s very common to tightly control what you can and second guess everything. I get it. Please don’t hesitate to reach out for help. This is a major life stress. Short term medications can do wonders and sometimes just having a kind, neutral person to talk to is enormously helpful. Be kind to yourself, my friend.
Re: Our Beloved Loved One has passed away
Thank you again Juliegee.
It is very helpful that there are members on our forum that understand the language of dementia, OCD ...
Most of the street level psychochatter really does not address the underlying psychological points of view that
are typically life long challenges.
I thought that this thread could address the surrounding issues that occurred. By obsessing about what happened I can divert my energies away from obsessing about the feelings that surround it. The thinking obsession would be so much less painful than the feeling obsession.
There are quite a few aspects of what happened that could be discussed and learning how to care better for those with dementia could emerge. Anyone want to address the question of 77% oxygen sat?
It is very helpful that there are members on our forum that understand the language of dementia, OCD ...
Most of the street level psychochatter really does not address the underlying psychological points of view that
are typically life long challenges.
I thought that this thread could address the surrounding issues that occurred. By obsessing about what happened I can divert my energies away from obsessing about the feelings that surround it. The thinking obsession would be so much less painful than the feeling obsession.
There are quite a few aspects of what happened that could be discussed and learning how to care better for those with dementia could emerge. Anyone want to address the question of 77% oxygen sat?
Re: Our Beloved Loved One has passed away
{{{J11}}}, my heart just breaks for your loss. I have been following your posts and have so much admiration for your tireless efforts on behalf of your loved one.
I do think second-guessing ourselves is part of the human condition...we almost all do it to varying degrees at times. I am hoping you find some peace in knowing (as your ApoE4 family here certainly does), that your loved one had a wonderful advocate and caregiver in you. We should all be so lucky!
I do think second-guessing ourselves is part of the human condition...we almost all do it to varying degrees at times. I am hoping you find some peace in knowing (as your ApoE4 family here certainly does), that your loved one had a wonderful advocate and caregiver in you. We should all be so lucky!
Re: Our Beloved Loved One has passed away
J11. I'm so sorry. This must be a very difficult time for you. I have been reading your posts since I joined and based on what I read you were an extraordinary caregiver. I hope you will not blame yourself.
If it helps any, I've listened to and/or read hundreds of testimonies of near death experiences because this is an area that interests me. Almost every single one describes how they saw their loved ones mourning and grieving and tried to tell them they were fine and so happy, and not to grieve. Of course, the still living couldn't hear them because it was the spiritual, not natural, realm, that their loved one was now in. (Later, when the spirit returned to the body because it was not yet "their time" after all, the person would describe exactly where the grieving relative had gone during that time frame, exactly in detail what they did and said, etc, so they knew it was true).
Anyway, I am praying for you, dear one. We're here for you. You are not alone.
If it helps any, I've listened to and/or read hundreds of testimonies of near death experiences because this is an area that interests me. Almost every single one describes how they saw their loved ones mourning and grieving and tried to tell them they were fine and so happy, and not to grieve. Of course, the still living couldn't hear them because it was the spiritual, not natural, realm, that their loved one was now in. (Later, when the spirit returned to the body because it was not yet "their time" after all, the person would describe exactly where the grieving relative had gone during that time frame, exactly in detail what they did and said, etc, so they knew it was true).
Anyway, I am praying for you, dear one. We're here for you. You are not alone.
3,4
Re: Our Beloved Loved One has passed away
Lucy5, thank you for your very kind words.
It is so wonderful to have this online community where the people know dementia.
In a typical sample of people, the level of understanding might be somewhat vague.
I have peered deeply into our loved one's exome and from what I have seen I conclude that
we will not be able to truly know others until the genome is finally understood. Some of our loved one's
variants seemed very worrisome: though we do not know for sure. For example, there would be variants
in how synapses connected and our loved one might have a rare variant that might only occur once in 10000
people. This is a time in which we can look but not fully understand. There was quite a bit in our loved one's genome
that seemed potentially very scary. Most of it was likely benign, though there might have been a few in the over
60,000 variants that did have an effect.
It is so wonderful to have this online community where the people know dementia.
In a typical sample of people, the level of understanding might be somewhat vague.
I have peered deeply into our loved one's exome and from what I have seen I conclude that
we will not be able to truly know others until the genome is finally understood. Some of our loved one's
variants seemed very worrisome: though we do not know for sure. For example, there would be variants
in how synapses connected and our loved one might have a rare variant that might only occur once in 10000
people. This is a time in which we can look but not fully understand. There was quite a bit in our loved one's genome
that seemed potentially very scary. Most of it was likely benign, though there might have been a few in the over
60,000 variants that did have an effect.
Re: Our Beloved Loved One has passed away
J11 you did an exceptional job of caring for your loved one. I could not myself have done as much as you did. I'm so sorry for your distress.
Am I interpreting correctly that you want to talk about the lowered oxygen saturation and fast breathing? I would guess a lung issue but there aren't enough details to get a good sense of what exactly happened.
Am I interpreting correctly that you want to talk about the lowered oxygen saturation and fast breathing? I would guess a lung issue but there aren't enough details to get a good sense of what exactly happened.
Re: Our Beloved Loved One has passed away
Thank you Nancy.
I have appreciated your comments on my genetics thread: I have done my best to make sense of the genetics,
though perhaps I have sometimes been offbase.
It helps so much that we are a community with specific dementia knowledge.
I was surprised how often doctors and many others did not appear to have a clear conception of what dementia was.
In the modern context, one would have thought that the designation Dementia Doctor would be the default career choice
of almost any pre-med student. This is the age of dementia, I can hardly think of any other kind of MD that I would consider
becoming.
There is a large narrative that accompanies what happened, and it could be very useful if I provide this description on this thread.
I will be especially interested to hear the comments of others on what I should have done at certain points of the story.
I have appreciated your comments on my genetics thread: I have done my best to make sense of the genetics,
though perhaps I have sometimes been offbase.
It helps so much that we are a community with specific dementia knowledge.
I was surprised how often doctors and many others did not appear to have a clear conception of what dementia was.
In the modern context, one would have thought that the designation Dementia Doctor would be the default career choice
of almost any pre-med student. This is the age of dementia, I can hardly think of any other kind of MD that I would consider
becoming.
There is a large narrative that accompanies what happened, and it could be very useful if I provide this description on this thread.
I will be especially interested to hear the comments of others on what I should have done at certain points of the story.
