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.

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.

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.

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.

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.

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.

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.

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

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?

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.

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.