Our Beloved Loved One has passed away
Re: Our Beloved Loved One has passed away
What a moving story. Thank you for sharing that beautiful find with us. Sounds like you have a lot in common with your loved one.
3,4
Re: Our Beloved Loved One has passed away
Thank you Nancy.
Those handwritten notes were such a contrast to everything else in the vault.
What I still do not understand is how this all unfolded. The night before the rapid breathing, everything seemed fine. I have already attached the oxygen sat and pulse for this day. It looks OK. It was only around midnight when I turned our loved one to change the bed pad that the rapid breathing started. I do not understand why that would cause such a response. In the morning when the situation had clearly not changed I became much more worried.
Our loved one seemed to be very sensitive to position changes. Oftentimes when a move occurred
seizures would then ensue. However, if we were to reposition, the seizures would then quickly stop.
I am unsure now whether simply repositioning once the hyperventilation started might have helped.
I have attached the oxygen sats for the Day -2 before the morning of hyperventilation.
Those handwritten notes were such a contrast to everything else in the vault.
What I still do not understand is how this all unfolded. The night before the rapid breathing, everything seemed fine. I have already attached the oxygen sat and pulse for this day. It looks OK. It was only around midnight when I turned our loved one to change the bed pad that the rapid breathing started. I do not understand why that would cause such a response. In the morning when the situation had clearly not changed I became much more worried.
Our loved one seemed to be very sensitive to position changes. Oftentimes when a move occurred
seizures would then ensue. However, if we were to reposition, the seizures would then quickly stop.
I am unsure now whether simply repositioning once the hyperventilation started might have helped.
I have attached the oxygen sats for the Day -2 before the morning of hyperventilation.
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Re: Our Beloved Loved One has passed away
J11 I have just seen this as I haven't had time to catch up on the 78 notifications still waiting for me, but for some reason I jumped over to unread posts and this was on top. I am so very sorry, even on a personal level as I've watched your unwavering commitment as a caretaker that provides a model for me and others.
I'm sure there's nothing you did wrong that needs identifying, but moreso your story provides lesson in the complex and sometimes impossible tasks dementia caregivers can be faced with. There are moments there is no right or wrong but just what is. Navigating caretaking in the context of dementia poses unique challenges that we can often find solutions to online, in support groups and elsewhere. But within that world there are also the unique circumstances of each patient all along the way, so in almost every case there will be uncharted territory to travel with no guide available. I know it's easy for me to say from my vantage point, but we can't expect more from ourselves than the best we are capable of in the moment. Something is the last straw for every person when they die. It may be that your loved one was just completely tuckered out and got a cold, and then something gave and a cascade ensued, completely beyond your control. The most important thing is that your loved one died having been so loved, no small thanks to your unbelievable vigilance and advocacy over the long years.
Thank you for sharing your story and letting us in your world. Even if your loved one didn't have e4, we as e4 carriers need to acknowledge that we're not just more affected by the risk for Alzheimer's disease in our own future, but we're more affected by the caregiving role since: 1) AD is more frequent in our families, and 2) we're more susceptible to the intense and chronic stress dementia caretaking involves. Once we are caretakers the chronic stress can eat away at the hoped for success of our our bravest dietary, exercise, supplement and other interventions. E4 can become a vicious circle if we're not careful.
Be extra good to yourself J11 <3
I'm sure there's nothing you did wrong that needs identifying, but moreso your story provides lesson in the complex and sometimes impossible tasks dementia caregivers can be faced with. There are moments there is no right or wrong but just what is. Navigating caretaking in the context of dementia poses unique challenges that we can often find solutions to online, in support groups and elsewhere. But within that world there are also the unique circumstances of each patient all along the way, so in almost every case there will be uncharted territory to travel with no guide available. I know it's easy for me to say from my vantage point, but we can't expect more from ourselves than the best we are capable of in the moment. Something is the last straw for every person when they die. It may be that your loved one was just completely tuckered out and got a cold, and then something gave and a cascade ensued, completely beyond your control. The most important thing is that your loved one died having been so loved, no small thanks to your unbelievable vigilance and advocacy over the long years.
Thank you for sharing your story and letting us in your world. Even if your loved one didn't have e4, we as e4 carriers need to acknowledge that we're not just more affected by the risk for Alzheimer's disease in our own future, but we're more affected by the caregiving role since: 1) AD is more frequent in our families, and 2) we're more susceptible to the intense and chronic stress dementia caretaking involves. Once we are caretakers the chronic stress can eat away at the hoped for success of our our bravest dietary, exercise, supplement and other interventions. E4 can become a vicious circle if we're not careful.
Be extra good to yourself J11 <3
ApoE 3/4 > Thanks in advance for any responses made to my posts.
Re: Our Beloved Loved One has passed away
Dear circ, thank you for your comment.
It is interesting how the community tried in the past to match people up based on illnesses, even when the genetic understanding was quite vague. This was quite true in our family.
Our loved one without an epsilon 4, married a spouse with one.
Our loved one developed severe dementia, the spouse never did.
When I have noted this fact to some on 23andme, they were briefly quite worried.
Only half of those with Alzheimer's have an epsilon 4. Those who think that not having
an epsilon 4 is a free ticket out of dementia are not well informed.
The sibling of our loved one married into a family with ALS.
The sibling never developed dementia, though their spouse did develop ALS.
Perhaps now that we have reached the genetics age, we can do these matchups in such a way that the
genetics would work in the best interest of all. By filling in the knowledge gaps we might be able to balance out
the genetic pluses and minuses.
One aspect that I have yet to mention is the exact nature of how this unfolded. I think it is fair to say that the
severity of the current Alzheimer's crisis and the standard of care that socialized medicine can provide was
directly involved (at some level) with what occurred. Our loved one was medically stable for hours before being
transported to hospital. Once in the care of others, there was a near immediate decline in vital signs. Our loved one
coded within minutes of arriving at hospital.
It is interesting how the community tried in the past to match people up based on illnesses, even when the genetic understanding was quite vague. This was quite true in our family.
Our loved one without an epsilon 4, married a spouse with one.
Our loved one developed severe dementia, the spouse never did.
When I have noted this fact to some on 23andme, they were briefly quite worried.
Only half of those with Alzheimer's have an epsilon 4. Those who think that not having
an epsilon 4 is a free ticket out of dementia are not well informed.
The sibling of our loved one married into a family with ALS.
The sibling never developed dementia, though their spouse did develop ALS.
Perhaps now that we have reached the genetics age, we can do these matchups in such a way that the
genetics would work in the best interest of all. By filling in the knowledge gaps we might be able to balance out
the genetic pluses and minuses.
One aspect that I have yet to mention is the exact nature of how this unfolded. I think it is fair to say that the
severity of the current Alzheimer's crisis and the standard of care that socialized medicine can provide was
directly involved (at some level) with what occurred. Our loved one was medically stable for hours before being
transported to hospital. Once in the care of others, there was a near immediate decline in vital signs. Our loved one
coded within minutes of arriving at hospital.
Re: Our Beloved Loved One has passed away
I wouldn't be at all surprised. Do you think your loved one had just become too frail to cope with the physiological changes and trip and her stress management system came to a halt? What a joltJ11 wrote:I think it is fair to say that the severity of the current Alzheimer's crisis and the standard of care that socialized medicine can provide was directly involved (at some level) with what occurred. Our loved one was medically stable for hours before being transported to hospital. Once in the care of others, there was a near immediate decline in vital signs. Our loved one coded within minutes of arriving at hospital.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
Re: Our Beloved Loved One has passed away
Thank you for your comments circ.
I am still trying to work this one through.
In the morning we noticed that our loved one had labored breathing.
This had continued from the previous night.
The lab readings found that there was an infection.
The blood results showed:
WBC 10.9 [4.0-11.0]
HB 10.2 L [12-16]
RBC 3.1 L [4.2-5.4]
The rest of these blood counts were also out of range though not by much.
ABS Bands 5.1 H [0.00-0.70]
Neuts 3.05 [2.5-7.5]
Lymph 2.18 [1.5-4.00]
mono 0.55 [0.20-1.5]
So it seems isolated bandemia.
Gram positive bacili and cocci (in chains) found in the blood culture.
Lactobilius plantarum, Streptococcus anginesis, Eikenella corrodens
Any observations by those on the thread would be greatly appreciated,
I am still trying to work this one through.
In the morning we noticed that our loved one had labored breathing.
This had continued from the previous night.
The lab readings found that there was an infection.
The blood results showed:
WBC 10.9 [4.0-11.0]
HB 10.2 L [12-16]
RBC 3.1 L [4.2-5.4]
The rest of these blood counts were also out of range though not by much.
ABS Bands 5.1 H [0.00-0.70]
Neuts 3.05 [2.5-7.5]
Lymph 2.18 [1.5-4.00]
mono 0.55 [0.20-1.5]
So it seems isolated bandemia.
Gram positive bacili and cocci (in chains) found in the blood culture.
Lactobilius plantarum, Streptococcus anginesis, Eikenella corrodens
Any observations by those on the thread would be greatly appreciated,
Re: Our Beloved Loved One has passed away
J11, sorry no great medical insight. I just wanted you to know I've been thinking about you. As the dust settles, I hope you're figuring out your new normal and finding time to be good to yourself. You deserve it.
Re: Our Beloved Loved One has passed away
Me too J11! What she said. I wish I could be more helpful. Please trust that everything you did for your loved one was enough without having all the answers. Every answer will lead to another questions. Let any answers that come along just be a footnote to the much more profound story of the love and dedication you whole-heartedly provided. (I know it's easy for me to say )
)ApoE 3/4 > Thanks in advance for any responses made to my posts.
