This is something I've never done before. The hell with the errors and punctuation and grammar, this one's on me. I want to write about something Terri and I and her family are going through. It is one of the most vicious diseases I have ever witnessed. Any of you that have read much of what I've written in the last 3 years, know that I know pain. The deep, agonizing physical pain that will make you want to die, to literally kill yourself. Terri has had breast cancer that was barely caught in time and I had my own bout with prostate cancer. None of the above hurts like what we are going through right now. I would not wish this on my worst enemy.
Alzheimer's Disease
It's been going on with Terri's mother now for about a year, and to see how fast it has taken a woman who was so vibrant and independent and made her into a shell of her former self is heartbreaking. She is 80 years old. A year ago she could hold a conversation with me about politics or gardening or what have you, and knew as much or more than I did. Now, she cannot remember to take a bath. This woman never had a hair out of place and her house was always spotless. This morning, I had to leave the house from the stink where she has let cats use the bathroom in her house.
This morning was the worse. Terri and I were asleep around 3 a.m. when the phone rang. Terri's sister, who lives near-by and stays with her mother every night, away from her own family, had argued with her mother. Her mother called and told Terri her daughter had kidnapped her and had her locked up in some building somewhere. It was unreal. Terri, crying herself, talked to her for over an hour trying to convince her she was OK, and not kidnapped or in danger. She told her we would be there would be there at first daylight.
When we arrived, her mother, sister and her husband had already argued and her mother was crying and afraid. She was asking what was wrong with her? What do you say to someone like this. Someone who doesn't remember what she just did and will call you a liar, no, a goddamn liar, if you tell her different. This from a woman who has not said a cuss word in the 23 years I have known her. Never. She wants to commit suicide, but either doesn't know how or can't remember to do it. It is tearing this entire family apart. Her son-in-law, whose house they let her live in, for free, has had enough. He and I both think she is a danger to herself and others and should be placed in a home for people with her condition.
Terri and her sister and brother, are all undecided and hate to, "throw her into a nursing home". I say there are places that are more like apartment complexes, that have games and outings with the other patients and will keep her safe. I told her mother what I thought, and of course, she doesn't not want to leave her house. I do not blame her, I wouldn't either. But to bolster my point, when we arrived back home, her mother called and asked Terri who "was that man with her at her house"? That man was me, and I've known her for over 23 years. Her son called this morning and talked to her, twice, yet she is raising hell about him not calling her for weeks. This cannot go on.
It is stressing out the whole family, especially Terri and the doctor has told me twice, to keep all the stress I can away from her. She has had a serious stomach problem for over 2 years, and it's only getting worse. There is nothing else to remove. When does the love for the parent with Alzheimer's, take precedence over the love of your wife or loved one? I am asking. I know there are many of you out there who have gone through this.
I know there is no right or wrong answer, only a decision to be made and carried out. There are no good guys and bad guys here. The bad guy is the Alzheimer's, this vicious disease that while painless, is more painful that anything I've ever seen. A disease that affects everyone it touches. I've copy and pasted the meaning of the disease below, for anyone who is not familiar with it but believe me, with people living longer, this is going to be a problem of tremendous magnitude for families all over the world. I ask only for your thoughts and suggestions.
Alzheimer's Disease - A progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behavior. One in 10 persons over 65 and nearly half of those over 85 have Alzheimer's disease. U.S. society spends at least $100 billion a year on this disease. Neither Medicare nor private health insurance covers the type of long- term care most patients need. More than 7 out of 10 people with Alzheimer's live at home. Almost 75% of the home care is provided by family and friends. The remainder is "paid" care costing an average of $12,500 per year, most of which is covered by families. (Alzheimer's Association - A progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behavior. One in 10 persons over 65 and nearly half of those over 85 have Alzheimer's disease. U.S. society spends at least $100 billion a year on this disease. Neither Medicare nor private health insurance covers the type of long- term care most patients need. More than 7 out of 10 people with Alzheimer's live at home. Almost 75% of the home care is provided by family and friends. The remainder is "paid" care costing an average of $12,500 per year, most of which is covered by families. (Alzheimer's Association
**Last night, again, she called not knowing where she was at. She thought she was in another town and was going to get in her car and leave and try to find her house. She was in her house. This has to be remedied, soon.


Salon.com
Comments
Ideally long term policy on this would be decided without religious or business interest as the top priority but in the short term we have to make the best with what we've got.
Good luck to you and yours, scanner. I've missed getting over here lately, too much going on.
I swear the idea of the home was much much worse than the reality for husband's family. I hope you find the solution that works for your family, and best wishes to you all going forward.
It is such a tough reality when this disease hits.
The difficult part can be that to go into a home you have to give up your house and all your money. That is not easy sometimes for relatives to come to terms with.
There are excellent caregivers who could work with your mom in her home. She needs help. She is definitely in danger. There are also great meds that will reduce that anxiety and can be crushed up in a little ice cream so she doesnt even have to know about them.
Professionals can help. You know me. I would love to welcome her into our fold and take care of her. We are a team and therefore have lots more patience than just one person. Plus we know how hard it is going to get. Once they forget that they forget that takes the edge off but it is always a sad decline. Keep us posted.
It feels like a betrayal to put your mother in a care facility. Mine lived with me for almost ten years. She spent the last 8 months of her life in a nursing facility, and the remaining month in a hospice house.
I had to remind myself constantly that the situation was not about me, my love for my mother, or my desire to care for her personally at home until the end of her days. The situation was all about my mother's safety, and ensuring that she had the best care and pain management possible.
I am profoundly grateful to the staff of the two care facilities that tended to my mother. She had sweet moments at both and admitted to me that being able to call an aide for assistance when needed was a huge relief for her. The nurses stayed on top of things and in the end met her needs much better than I could ever have done at home.
Do the best you can.
r./
http://open.salon.com/blog/rwnutjob/2012/01/23/dealing_with_a_parent_who_has_frontotemporal_dementia
It's an awful disease, and forces you to face lots of hard questions. When Daddy was uncontrollable and kept wandering out of the house and fighting with his long time companion, Mildred, who was pretty feeble herself by that time, we had to move him into a nursing care facility. The nurses loved seeing both my mother and his "lover" come in everyday to care for him--they used to tease him that he must've been a helluva man to get two women who should've hated each other to cooperate so well. He was exactly that. And they cooperated to make sure he got the care he needed. It was the only choice we had, after a while. It hurt...but he and Mildred were both safer that way.
My heart goes out to you. Have that family meeting someone else suggested, and research your options, as we did. Daddy was peaceful and well cared for in the home we chose, where they knew how to work with him far better than we could have. Toward the end, he couldn't swallow or anything else, and we would never have been able to deal with this the way his nurses and doctors did. I feel he had a more humane life there, and when he passed, we didn't feel an ounce of regret.
I hope you find the right solution, too.
R - with love and empathy
♥
Lezlie
My biggest fear and I was so sad when I read this.
Apologies for being late on this one.
This one should be everywhere.. well said my friend
HUGGGGGGGGG
I have become stranger and stranger to my brother, and he to me. I am stranger not because of proximity--he 'lives' in Canada and I in Oregon, but because of AD. My hero, father-figure, oldest brother is seldom recognizable as he becomes stranger and stranger to his siblings, each of us waiting for our own sentence in turn. My grandfather, two uncles, and a cousin—all from my mother’s side of the family—have already succumb to AD.
My sister-in-law has done a remarkable job caring for my brother for the last ten years as he slowly disappeared into AD. I am in awe of her. I could not do as she has done, and I hope no one will be called upon to do so for me.
If I stand about six feet away from him in the right light, I will sometimes see him look at me intently, chasing a flash of memory or recognition. The times I am least strange to him are when I have brought him banana bread or chicken and dumplings like our mother used to make. Those he wolfs down with a broad smile. Sensory memory seems to be that last to go. Most of his siblings have traveled to see him in the last year. We fear or hope this is his last year in his prison. I am recently reminded that one can hold two conflicting emotions at the same time.
that thankfully progressed slowly & w/o paranoia,
and did not steal his basic recognition of his family,
had a saying once upon a time,
when he was magnificent,
trim, eruidite, easygoing
and THE BOSS,
"Tis time".
He only brought it out on occasion, but when he said it
he meant it..
The horrifying truth is that the lady you once knew
is never coming back, ever, except in rare flashes.
These will have to do.
Now is the time for
the hardest decisions,
the ones that will tax your conscience sorely:
"When does the love for the parent with Alzheimer's,
take precedence over the love of your wife or loved one?"
Safety first, always.
For mom & Terri.
There is alot, and i mean ALOT, of help out there,
for this is an epidemic...
If it happens to me that what I want my kids to do. Or shoot me.
Blessings.
people who have dedicated themselves to it
to care for them..
the great challenge, i guess, is finding such a place
for her....this is all you can do....really....
Visits!/ to her, there, whererever...
heartaches interspersed with amazing clarity.
Safety first, as i said...
It will take time to get her into a home where she can receive the care she needs. These things take months. I know all too well, like others here. I dealt with a former MIL. For sooner rather than later a zenith will happen. She will wonder off down the roadside. Or drive somewhere across state or out of state. ....
and yes this whole family unit that you are a part of is in disarray. It will need much mending after situation number one has been resolved...
I'll be thinking of this friend. I know it sucks wind with all the rest you deal with, like that alone ain't enough grief...
Second, get her doctor to write you a letter saying that she is unfit to drive. Take that to your DMV and get her licence yanked. Others on the road have a right to know that they aren't facing a driver in her condition.
Third: The biggie. The elder daughter.Will she talk to her mother's doctor? Does she have someone she particularly trusts that can talk to her - say a trusted advisor or minister? Somehow it MUST be brought home to her that this is real and terribly dangerous for both her mother and for others around her.
After that, you already know that momma has to go into a care facility, want to or not, unless the family can provide the 24/365 care she needs. It is imperative that she get this care. Thousands of Als patients accidentally kill themselves every year when without proper supervision.
Best to you all who are touched by this.
.
Sky provides good practical truth.
These folks wander. After what, we cannot know.
Some vestige of past goodness & light. But with it comes
the Paranoia, that there are Those Who Would Steal My Mind.
of course it is the disease, Alzheimer's, becoming
perversely self-conscious...it projects this
awful foe in its own brain out
unto others... this is scary...
the only conspiracy against them is one of their own
neurons' making, tragically...
as sky says...with fervor that i endorse...
"Somehow it MUST be brought home to her that this is real and terribly dangerous for both her mother and for others around her."
Sky provides good practical truth.
These folks wander. After what, we cannot know.
Some vestige of past goodness & light. But with it comes
the Paranoia, that there are Those Who Would Steal My Mind.
of course it is the disease, Alzheimer's, becoming
perversely self-conscious...it projects this
awful foe in its own brain out
unto others... this is scary...
the only conspiracy against them is one of their own
neurons' making, tragically...
as sky says...with fervor that i endorse...
"Somehow it MUST be brought home to her that this is real and terribly dangerous for both her mother and for others around her."
relaying to you my experiences with Alzheimer's — clinical and personal, will not ease the burden coming. my thoughts and good wishes go out to you.
I understand how difficult these choices are, how do we balance caring for our loved ones and ourselves? When it becomes a question of well being and safety, the answer is clear but never easier to come to. Life can be such a slap in the face sometimes . . . . I hope your family finds the best way to help your mother in law. Even the hardest choices, when made in love and compassion are never wrong.
You're a good man Scanner, you need to know that.
All I can suggest is that Teri, wonderful redhead that she is, has to be your priority. But you already knew that.
Hang in there Ken. Roger
Alzheimer's is -- as you say -- probably the most vicious disease I can think of, perhaps with the exception of it's physical opposite, ALS or MS, which rob the body of mobility, speech, dignity, while leaving the mind intact, trapped in a shell.
I could not recommend what you should do, only that at some point, where you are, that you have to ask -- which sacrifice will I make, because that's the end result. The choice must be made. It may sound cold hearted, but I would choose to save my family from that pain as much as possible -- which means some form of hospice care.
You are not recognized some of the time now. It will only get worse. When those episodes occur, no amount of familiar faces are going to really make a difference. The fear, the stress the confusion of just not knowing will still be there -- with or without you.
I would hate the choice, no matter which way I was persuaded to go -- you will too, most likely. My heart tells me, though, that the least painful choice is the one that preserves the spirits and sanity of those not afflicted with Alzheimers in the family. It's a lesser evil on the whole. And it still totally sucks, knowing that you are probably taking the more enlightened path in preserving the many over the one.
Really sorry to hear about this. You have my thoughts and you also have my hearfelt condolences.
--r--
and Yes - Dear`
`
Sentient James M. Emmerling . . .
Life goes by so fast. I'm reminded:
`
`
during the vows
the flower girl leering
at the best man
`
I wish we had answers
Try to take care. Bless
Live each day rejoicing
It's beyond proper word
He/She tell me what to?
The Words can't convey
Often ... We intuit sad
Words do fall short
Take each day by day
Try to rejoice each day
Life's human/divine
Oh, a grand/mystery
`
Be there for each other
`
pull him out of Hades for a while...what i do not get
is where the hell these friggin great souls go...
when their brains solidify prematurely..
with 'plaque', they say? where is a man's
or a woman's essence when this happens?
i have a few answers, but ..nothing really.
i want to know there is a safe haven
for all our beloved old folks...
in my work, i manage
to provide a small
bit of it...
but the raw terror ..how it must eat them up..
sorry.
didnt mean to be negative.
look: there is help.
alot of good gals and boys are devoted to this new science,
this science of old folks...gerontology, they call it.... and most
of em are the nicest freshest-faced young folks you
could ever want to care for a mom or a dad. really.
flower girl 'leering' at best man?
this is something my imagination
must not ignore, damn that
old blueberry hick's soul!
ay
Rated.
Take care.
It's rotten. It's awful. Anyone who tells you any of you have a choice is kidding themselves, and you.
What's safer for your mother in law? What's safer for your wife?
Just because it's easier for you, in terms of your worrying less about all concerned, doesn't mean you get to feel guilty about it. You didn't ask for Alzheimer's for your mother in law. She isn't in good enough cognitive shape to get a vote. That's tragic, but it's also true.
Scanner, I know what you are going through. I watched my Dad deteriorate and my own Mother never saw it. She would tell him where to turn and stop when they were in the car. He would get lost, walking the dog. It wasn't until I noticed his crossword puzzles no longer made any sense, and then I took a drive with them!
Now Mom asks me the same questions over and over. She's still there, but her memory is fading. It drives me nuts, when I cook one of her favorites and she says, " what's this? I'm not going to eat this!" When I tell her, you always cooked that when I was a kid. She replies " I don't even know what it is, I would never cook something like that!". So we go down that path once more. I really fear, that someday that could be me, as well.