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What will the End Look Like
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: Sarah12

quote:
Originally posted by Ginkdeal:
We lost our darling mother in law a week ago Sunday. MY FIL cared for her at home and right up to the end she was in her bedroom. I do, however, have a suggestion for other families. You ALL need to discuss what will happen at the end and what the end will look like so that ALL of you know it is rapidly approaching.

My FIL called hospice on a Wednesday and she died the following Sunday. Dad wanted her home, and so she stayed with loads of help. I do think the strain on him was enourmous and I suspect we will begin to see the results in a few days.

I think everyone in the family needs to know EXACTLY what the end signs are. With us, Mom stopped eating and drinking and Dad with the support of his children, elected not to have a feeding tube inserted. My husband and his brother were able to race home and sit with her and tell her goodbye. She died about 36 hours later.

This is not an easy process, particularly watching the care giver stave off death. But death wins, and I truly believe she is released and is off playing bridge with old friends and laughing and carrying on. She's graduated and we are the ones left behind.


Gone from My Sight: The Dying Experience
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: BeckyP

quote:
Originally posted by MomsSon:
My deepest sympathy, I a lone-son carry for mom
now; think advance stage, We went through the
early delusions with distractions and therapy
of color smells, and music; Lighting and all in
all her essence is still here, She has always been a sweet smling sunshine, and I have done all I can to preserve it. Now only here speech
is now totally inaudible. We pretend mostly
and go with the flow,.. But Since I am in this for the long haul, literally moved out of town
to settle in for a great moms who's sacrafice
for me,.. I really want to be there for her;
How will I know? when then end time is near?


MomsSon,

I was just looking through some posts and came across this thread, and realized that no one ever responded to your post.

I too, am caring for my mom in late stage AD, in her home. Although I have been with a few people at the time of their passing and have thought I was losing my mom a couple of times, I realize that even though we know it is coming and is going to happen, sooner than we expect or want, I am still not totally prepared for that last breath and she is no longer with me. I really don't think we can ever be emotionally prepared, but only to know that it is happening and is close at hand and be there with them.

I too, have come to love to see her just smile, giggle, say some funny little thing and most of all still say, I love you too, in response to me saying, I love you so much.

I just wanted to say Hi and give you recognition for your post here, sorry it took so long.

How are you and your mom doing? Please let us know. I hope you are at least still reading here and getting some sort of support during this difficult time.

It is horrible to go through this all alone.
Internal Administrator
Posted: Friday, January 6, 2012 8:48 AM
Joined: 1/14/2015
Posts: 40463


Originally posted by: Ginkdeal

We lost our darling mother in law a week ago Sunday. MY FIL cared for her at home and right up to the end she was in her bedroom. I do, however, have a suggestion for other families. You ALL need to discuss what will happen at the end and what the end will look like so that ALL of you know it is rapidly approaching.

My FIL called hospice on a Wednesday and she died the following Sunday. Dad wanted her home, and so she stayed with loads of help. I do think the strain on him was enourmous and I suspect we will begin to see the results in a few days.

I think everyone in the family needs to know EXACTLY what the end signs are. With us, Mom stopped eating and drinking and Dad with the support of his children, elected not to have a feeding tube inserted. My husband and his brother were able to race home and sit with her and tell her goodbye. She died about 36 hours later.

This is not an easy process, particularly watching the care giver stave off death. But death wins, and I truly believe she is released and is off playing bridge with old friends and laughing and carrying on. She's graduated and we are the ones left behind.

Families need to talk. Don't be afraid to ask questions like - where do we want Mom/Dad to die? What are the signs of impending death and who wants to be called? That way everyone gets to plan how and if they wish to say goodbye and no one feels left out of the process. This is a disease we are fighting - not each other.
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: Cecilia, aka, Ces

Becky

No one is ever prepared for the loss of a LOVED ONE. I know, we weren't. In my family, we knew that my mom's inevitable passing, was expected, but we didn't expect it to happen so soon. My mom passed away at 3:23 a.m. on January 29th, 2010.

My mom was in a nursing home with a peg-feeding tube and on a trach tube ventilator at the time of her death. My mom was accepted by hospice and was in the process of getting transferred to an affiliated facility, when we got the call from her assigned doctor at the nursing home on the morning of January 29th, 2010, that my mom had passed away.

This past Friday, February 19th, 2010, is 3 weeks that my mom passed away. There isn't a day that I cannot say that I don't miss her. My mom had issues with my middle sister and I, but in the end right before her condition deteriorated for the worse, my mom started to reach out to my sister and I and her mood even started to mellow. Then my mom started to waste away right before our eyes and there was nothing any of us could do.

Even my mom's doctor could do no more other than adjust her meds and place her on nutritional supplements(glucerna/boost).

Eventually, my mom lost her battle with this wicked disease.
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: Lisa 428

Dear Ginkdeal,
Hello and welcome to the AD message boards. I am so sorry for the loss of your Mom. I'm glad you all were able to have you Mom's last days at home.
You are correct about families needing to talk. It is important to have those talks, if you can, before people with dementia have gone too far in their disease.
Thanks so much for sharing.
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: Carolina Songbird

Angela, welcome to the message boards. I know how scary it is to wonder if dementia is in the future for a loved one. Both of my parents have dementia diagnoses.

Please visit us as often as you like. You will find more activity on the caregivers forum than here, but there is help and encouragement in many places.
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: Lisa 428

AngelaE8654,
May I add my Welcome. I know it is difficult not to know what is going on with your husband. Please, encourage him to see his doctor and have a check-up. If it turns out the he does have some form of dementia like AD, early diagnosis and treatment are very important in treating this disease and in his prognosis.

Please, take care. Please, read and post in the Caregivers site as there is lots of support and information there.

Good Luck.
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: Katrinca

I too am in the same boat - my husband is in last stage, so death is just a matter of when he is ready to let go...how will I know? what will be the signs? He eats, but very little, his color is still good - just want to be prepared for what is going to happen at the time of his death. Scared, so very scared.
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: AngelaE8654

I am also sorry about the loss of your mother in law. Thank you for your post about what the end looks like. Right now, we're not really sure about anyone in our immediate family, but my husband worries about it quite a bit, as he has had some family members with it and his memory is not what it used to be. Actually, his short term memory sometimes is pretty bad. It's kind of scary to think about.
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: Lisa 428

Dear Ginkdeal,
How are you and your Dad doing? Just thinking of you both.
Hope things are going well.
Please, let me know how you all are.
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: Johanna C.

Dear Ginkdeal:
I am very sorry to hear of the loss of your beloved mother. That you are such a loving and caring daughter must have been a wonderful blessing for her.

Thank you very much for sharing your experience and your insights, that was a very lovely thing to do in light of what you are currently facing.

I don't know whether you are already planning to do so or not, but I'd like to invite you to the forum here for those who have experienced the death of their Loved One; it is the, "Caregiver's Who Have Lost a Loved One" forum. You will find kindred spirits there who truly understand your feelings.

Let us know how you are doing, we will be thinking of you.
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: MomsSon

My deepest sympathy, I a lone-son carry for mom
now; think advance stage, We went through the
early delusions with distractions and therapy
of color smells, and music; Lighting and all in
all her essence is still here, She has always been a sweet smling sunshine, and I have done all I can to preserve it. Now only here speech
is now totally inaudible. We pretend mostly
and go with the flow,.. But Since I am in this for the long haul, literally moved out of town
to settle in for a great moms who's sacrafice
for me,.. I really want to be there for her;
How will I know? when then end time is near?
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: bouldercreekgreg

With my Dad, 87, who died June 12, it was a combination of things. It usually is, I hear.
Last September, just before his last birthday, he went to Mom's eye appointment and in the waiting room he began shaking. He had had a 60 heartbeat for 3 years, but Mom, 84, who also has AD, and Dad's Doctor, just never got around to getting him a pacemaker. Or a truss, (he had a hernia, which because of his age, could not be operated on)!
Mom was called three days after he had the pacemaker installed and was informed she could come and pick him up. He couldn't walk, so an assistant loaded him in a wheelchair and took him out to the Toyota Camry.
This in itself was unbelievable, because even if she had gotten him into the car, how would he have gotten out of it and up three steps into the house? And down the hallways? Or to the bathroom?
Mom, of course, just watched this without objecting.
The assistant went and got a male assistant and together they still (6' and 160 pounds) could not get him in the car. They gave up and put him back in bed.
For three days he complained his left foot bothered him, but they ignored him, put him on painkillers, and transferred him to a skilled nursing facility.
After a few days there he finally convinced his nurse to have him X-rayed. They found two broken bones in his left ankle. Now get this, he walked into the eye appointment, he never broke a bone in his whole life, and guess what? They said they were two "old" fractures.
So they put an inflatable boot on him. He didn't get physical therapy every day, and he needed it. Mom said "Everythings fine, your Dad is doing well.
He wasn't "fine", but I didn't know it because I was dumb enough not to have Mom send me photos. I was dumb enough to believe her, because Dad didn't complain. He spent almost all of his time in bed except for meals. And he got blood clots in his legs from the inactivity. They prescribed Coumadin for the clots. This led to a pressure sore on his heel, which led to CA-MRSA.
See:
http://www.mayoclinic.com/health/mrsa/DS00735
I've been told a lot of us are carriers, and that our immune system keeps it "colonized".
See:
http://www.edcp.org/guidelines/mrsa.cfm
We have it in our noses and walk around not even knowing it.
Then Dad came down with pneumonia. He got better with treatment, but his immune system, and then his hunger started going.
In amongst all this, his ability to hold a conversation had begun to fade about the time he started taking Coumadin, and then got noticeably worse over the last 4 months.
Then his hunger started to go, and that was pretty much the end of his life. He was dead two weeks later. A stomach tube quite probably would not have helped, because quite often when you lose your hunger, it is because your body can no longer digest food.
Now I'm trying to help Mom, who won't let me help her, but that's another subject, for which I am better informed, if not prepared.
Anonymous
Posted: Friday, January 6, 2012 8:48 AM
Originally posted by: BeckyP

With my mom now in last stage, and caring for her in her home, I've only just recently started reading about the end. Just didn't want to go there before I absolutely had too. But now I have to educate myself so I know what to do and expect.

Even in this stage, she still giggles, says a few words, tells me she loves me too, hugs me back tight, holds my hand tight with her warm hands, and keeps the beat to my silly songs by clapping her hands together.

She still eats and is able to swallow, still drinks from a sippy cup, although in small bites and sips and it takes all day long to get enough nutrition down her. But I know that soon this will become a problem too, which does scare me, when she will no longer be able to swallow or starts choking.

She keeps her eyes closed most of the time in a semi conscious state.

Intellectually, I know this is no quality of life for her and want her to just peacefully pass in her sleep with no pain or struggles that I've read about.

But selfishly, I don't want to let go or give up. Even if it is just to hear her breath or feel the warmth of her touch and lay my head on her chest and hear her warm loving heart beat.

We've fought so hard only to lose the battle to AD.

I know that every beginnning has an end, but I don't have to like it or accept it without a lot of sadness, anger and disagreement to that fact.

May we all find a safe, soft place to land at the end however that may come.