Martha H
03-08-2006, 09:30 PM
Here we go again.
My sister once again wrote to me about her phone conversations with Mom. E has been denying that Mom has dementia ever since it was diagnosed in the Fall of 04, and after she had been steadily deteriorating for 2 years already.
Today E thinks Mom gave her wise advice. E's husband had surgery, and she herself has a swollen knee, so she is of course really worried and upset about both of their problems : but, she insists that on the phone Mom understood all about her problems, gave her excellent advice, etc.
Oh how I wish it were really so. When I talk to Mom, she sometimes sounds normal but only if you are talking about simple things. How is the weather, have you eaten. I might mention my grandchildren and hear Mom say "who?"
But E always tries to convince me that Mom doesn't have dementia, never did, and all the symptoms we saw when I lived with her were more or less my fault: Mom wasn't getting enough water to drink, Mom was overstimulated by TV, or Mom was understimulated by not having anything intellectual to do, or I forgot her vitamins, or I misdosed her medicines, or just basically was not the right caregiver to bring out Mom's best side.
Now I've been here for 9 months. I visited Mom once and she hardly knew me. On the phone she may or may not know who I am. Bill sees her almost daily and always sends out a calming report, she is fine, no more cough, eating well, trying to walk a few steps with the walker, etc. But no claims of having an intellect. No claims that she is mentally fit.
Only from E who last saw her in late October, do I hear these reports. I feel sorry for her that she is in pain and her husband recovering from cancer surgery - but I also feel hurt by every insinuation that I have exaggerated Mom's deficits, and look on her as demented, when in reality she is as sharp as a tack. I also don't know how to answer such emails. It doesn't pay to argue. I just say hope you and J continue to get well.
I guess in a disease as awful as Alzheimer's, denial is a natural protection for those who cannot stand it, knowing or admitting the truth is just too painful.
Love,
Martha
My sister once again wrote to me about her phone conversations with Mom. E has been denying that Mom has dementia ever since it was diagnosed in the Fall of 04, and after she had been steadily deteriorating for 2 years already.
Today E thinks Mom gave her wise advice. E's husband had surgery, and she herself has a swollen knee, so she is of course really worried and upset about both of their problems : but, she insists that on the phone Mom understood all about her problems, gave her excellent advice, etc.
Oh how I wish it were really so. When I talk to Mom, she sometimes sounds normal but only if you are talking about simple things. How is the weather, have you eaten. I might mention my grandchildren and hear Mom say "who?"
But E always tries to convince me that Mom doesn't have dementia, never did, and all the symptoms we saw when I lived with her were more or less my fault: Mom wasn't getting enough water to drink, Mom was overstimulated by TV, or Mom was understimulated by not having anything intellectual to do, or I forgot her vitamins, or I misdosed her medicines, or just basically was not the right caregiver to bring out Mom's best side.
Now I've been here for 9 months. I visited Mom once and she hardly knew me. On the phone she may or may not know who I am. Bill sees her almost daily and always sends out a calming report, she is fine, no more cough, eating well, trying to walk a few steps with the walker, etc. But no claims of having an intellect. No claims that she is mentally fit.
Only from E who last saw her in late October, do I hear these reports. I feel sorry for her that she is in pain and her husband recovering from cancer surgery - but I also feel hurt by every insinuation that I have exaggerated Mom's deficits, and look on her as demented, when in reality she is as sharp as a tack. I also don't know how to answer such emails. It doesn't pay to argue. I just say hope you and J continue to get well.
I guess in a disease as awful as Alzheimer's, denial is a natural protection for those who cannot stand it, knowing or admitting the truth is just too painful.
Love,
Martha
Sponsor
cyt
03-08-2006, 10:46 PM
Oh Martha, how I hear you!!! With my FIL, when I told his Sis of his dementia, it was always "Too much Coffee" or "I need to take him for a second opinion". I guess some folks just have to hide their heads in the sand, although I haven't a clue why. It's selfish, I think. Because there always seems to be one or two left to pick up the pieces, left to do all the thinking, left to feel the hurt and pain of this, while the others, with their heads buried in the sand, go merrily along and live their lives as if nothing could possibly be wrong , and then they play the blame game. I say "walk a mile in my shoes, be the caregiver for a week or two and then we'll talk." Martha, I'm sorry this is happening - it's not uncommon. I doubt if you could change her mind - the only thing that would do it is for her to spend a lot of time with your Mom, but who knows. I just can't be that type of person, I have to see things clearly for what they really are so as to make the right decisions (hopefully). A storm is brewing here, gotta run! C
Sandyspen
03-08-2006, 10:52 PM
Martha,
I think you're exactly right. If they can't handle the fact of AD, they deny it. And for that denial to work, they have to reject any information the caregiver gives them.
My brother hasn't said as much outright to me, but I hear it in his tone, his dumb suggestions, and slight attempts to suggest that I might be exaggerating.
Unless you've lived with them, cared for them, and been there 24/7......you just don't get it.
They will ask my mom, "Don't you remember so and so happened," she says, "Oh yes, I remember that." And they have a look of glee. "See! She remembers!"
I guess it's a combination of the AD's ability to fake it and the non-caregiver's desire to 'hope it isn't so.'
In the end, I guess we have to accept that we did the best we could. And, probably, if we lived with them, we were the only ones to know how bad it really was.
I think you're exactly right. If they can't handle the fact of AD, they deny it. And for that denial to work, they have to reject any information the caregiver gives them.
My brother hasn't said as much outright to me, but I hear it in his tone, his dumb suggestions, and slight attempts to suggest that I might be exaggerating.
Unless you've lived with them, cared for them, and been there 24/7......you just don't get it.
They will ask my mom, "Don't you remember so and so happened," she says, "Oh yes, I remember that." And they have a look of glee. "See! She remembers!"
I guess it's a combination of the AD's ability to fake it and the non-caregiver's desire to 'hope it isn't so.'
In the end, I guess we have to accept that we did the best we could. And, probably, if we lived with them, we were the only ones to know how bad it really was.
ToBeFreeToRoam
03-09-2006, 12:19 AM
Hi Ladies,
Just try to ignore the people/family members who are in denial! That is their problem and you guys know that we all know our Alzheimers "bundles" really do have dementia, and all the other problems that comes along with this illness!!!
In my case, it is my mom, who is the main caregiver (but, also has ad slightly) who is in denial!!! She thinks that he gets better and then will stay the same. She just does not believe, me, my sister, my dads drs. and what she sees and hears from dad!
So, we all have our nay sayers, dont we?!
Take care. We can only do what we can do.
Love, Wannabe
Just try to ignore the people/family members who are in denial! That is their problem and you guys know that we all know our Alzheimers "bundles" really do have dementia, and all the other problems that comes along with this illness!!!
In my case, it is my mom, who is the main caregiver (but, also has ad slightly) who is in denial!!! She thinks that he gets better and then will stay the same. She just does not believe, me, my sister, my dads drs. and what she sees and hears from dad!
So, we all have our nay sayers, dont we?!
Take care. We can only do what we can do.
Love, Wannabe
BarbaraH
03-09-2006, 12:29 AM
Dear Martha,
Again, in Moo's case, it's probably a combination of wishing that Mom was fine and fear that if Mom has it, I could get it too. Between all of us and you, we know that Moo is determined to play dumb. Fine. This is beyond simple denial and high hopes. It plain flies in the face of fact, medical reports, and all of the evidence. Don't you juat want to shake Moo and ask her where her brain went?! :D
It would be nice if you could sincerely tell her you miss her and the wonderful friendship you used to share. Sadly, she wouldn't hear that either.
You have done well. You mother was able to stay home and safe thanks to you. You lasted as long as you could and now you've turned the baton over to your dear brother who has had to turn it over to medical staff. That's what is needed now. That's what is best for your mother.
Cheers!!!!!!!!!!!!!!!!!! You're soon off on a trip and you just let yourself be happy about that and blow off Moo. In fact, don't look at Moo's emails until you return home. Promise!! Ask Bill to let you know if anything that matters happens with her.
Hold your head up and be proud of yourself!!
((((((((((((((((((((squeezy hugs))))))))))))))))))))))) Barbara :)
Again, in Moo's case, it's probably a combination of wishing that Mom was fine and fear that if Mom has it, I could get it too. Between all of us and you, we know that Moo is determined to play dumb. Fine. This is beyond simple denial and high hopes. It plain flies in the face of fact, medical reports, and all of the evidence. Don't you juat want to shake Moo and ask her where her brain went?! :D
It would be nice if you could sincerely tell her you miss her and the wonderful friendship you used to share. Sadly, she wouldn't hear that either.
You have done well. You mother was able to stay home and safe thanks to you. You lasted as long as you could and now you've turned the baton over to your dear brother who has had to turn it over to medical staff. That's what is needed now. That's what is best for your mother.
Cheers!!!!!!!!!!!!!!!!!! You're soon off on a trip and you just let yourself be happy about that and blow off Moo. In fact, don't look at Moo's emails until you return home. Promise!! Ask Bill to let you know if anything that matters happens with her.
Hold your head up and be proud of yourself!!
((((((((((((((((((((squeezy hugs))))))))))))))))))))))) Barbara :)
Martha H
03-09-2006, 08:36 AM
Thanks for the good wishes. Yes, on Monday I leave for Germany for 4 weeks. I'll get to see my 9 year old granddaughter again, whom I have not seen since July 2003. Also my son, ex daughter in law, and many friends.
I will try to get onto HB and also my email now and then. I'll be staying with a girlfriend some of the time and with my granddaughter and her Mom some, and with my son some. Most of them have computers.
It is good to have a place where I can talk abut the many many frustrations of AD caregiving. It is sad that my sister is not taking her 1/3 of the burden .. a burden spread out is lighter to carry. Instead she adds to my pain by saying "it's not true."
love,
Martha
I will try to get onto HB and also my email now and then. I'll be staying with a girlfriend some of the time and with my granddaughter and her Mom some, and with my son some. Most of them have computers.
It is good to have a place where I can talk abut the many many frustrations of AD caregiving. It is sad that my sister is not taking her 1/3 of the burden .. a burden spread out is lighter to carry. Instead she adds to my pain by saying "it's not true."
love,
Martha
LuvMyLilDoggie
03-09-2006, 01:39 PM
Moo is probably having one sided conversations with mom. She's leading the conversations and only leaving room for yes or no answers. How could mom go wrong just by saying yes or no? That's how Moo's keeping the blinders on for so long. Don't allow her to get to you, Martha. You and Bill both know the truth and deep down, so does Moo. She'll just never admit it to you.
Whenever I see dad's brothers and sisters, they tell me "Bob's forgetting things? That's what happens when you get older." They don't want to see it in either of their brothers because they watched AD take their dad. If it's happening to two of the six of them, how much longer for the other four and who will it be? Scary thought. No wonder some people bury themselves in denial. They're terrified.
Love, Barb
PS Have a safe trip, Martha! And enjoy every minute of it!
Whenever I see dad's brothers and sisters, they tell me "Bob's forgetting things? That's what happens when you get older." They don't want to see it in either of their brothers because they watched AD take their dad. If it's happening to two of the six of them, how much longer for the other four and who will it be? Scary thought. No wonder some people bury themselves in denial. They're terrified.
Love, Barb
PS Have a safe trip, Martha! And enjoy every minute of it!
teapot
03-09-2006, 07:04 PM
My Dad was doing pretty good for a long time, but would up having some serious medical issues this fall. After that, when I was talking to him on the phone it was a lot easier to feel that he was doing pretty good. When I went to visit I saw that he could have a phone conversation out of reflex or habit but he wasn't really thinking about what he was saying. It's like he could stick to a script or something on the phone, but when I was there it all fell apart. It was scary how much different he really was - from my impression on the phone.
Teapot
Teapot
Martha H
03-10-2006, 04:01 PM
A conversation with an Alzheimer patient: Today on the phone Mom said she was fine. I talked for awhile about my upcoming trip and she tried to make appropriate comments, but got it wrong, thinking I was flying HERE to see my grandchildren. She doesn't remember that I live here now.
But that was OK. Then I asked her how she is doing. I said Bill tells me you walk a few steps every day with the walker, and are getting stronger.
Oh no, she says, I don't need a walker any more. I walk every day without anything. No cane, No walker. And I do exercises every day. She then proceeds to describe in great detail some of the same exercises she did as the chair exercise leader in Astoria for 25 years. She said she does them every day.
Actually the physcial therapist gave up on her in December and there are no exercise classes where she is now. It is all in her head, and sounds great to the person listening. "I walk all over the place now without any help," she says. That would be so nice, if true.
No wonder my sister thinks Mom is in fine shape - she has always believed everything Mom says! However, I'll hear from Bill later and he'll tell me no, she is not walking well even WITH the walker, which I know!
No further word on Medicaid, but we are assuming it will kick in on April 1.
Love to all of you,
Martha
But that was OK. Then I asked her how she is doing. I said Bill tells me you walk a few steps every day with the walker, and are getting stronger.
Oh no, she says, I don't need a walker any more. I walk every day without anything. No cane, No walker. And I do exercises every day. She then proceeds to describe in great detail some of the same exercises she did as the chair exercise leader in Astoria for 25 years. She said she does them every day.
Actually the physcial therapist gave up on her in December and there are no exercise classes where she is now. It is all in her head, and sounds great to the person listening. "I walk all over the place now without any help," she says. That would be so nice, if true.
No wonder my sister thinks Mom is in fine shape - she has always believed everything Mom says! However, I'll hear from Bill later and he'll tell me no, she is not walking well even WITH the walker, which I know!
No further word on Medicaid, but we are assuming it will kick in on April 1.
Love to all of you,
Martha
ToBeFreeToRoam
03-11-2006, 12:55 AM
Hi All,
I just have to put in a bit here! My dad has started - sort of - mixing two different sentences parts. Like starting out talking about one thing and then ending the statement with something totally unconnected with the beginning. And he acts like he said something really, totally correct and understandable! I just nodded my head and we went on to lunch or I say, yeah! If my mom had been in the room, she would have egged him on and made him try to explain what he was really trying to say.
She is in the stage where she thinks that she can help him either stay the same or make him better. Like she helps him count change at stores and restaurants (big line behind us!) I am behind them, saying, just give them one of your $20.s dad. And she also trys to help him play solitaire and dominoes. I really think that it is a learning (or not learning) experience for both of them!!! What can you do but laugh!!!!! :> Is better than crying. Or arguing.
Take care everyone. And have a nice trip Martha. Pop in every now and then. We need your expertise!
Love, Wannabe
I just have to put in a bit here! My dad has started - sort of - mixing two different sentences parts. Like starting out talking about one thing and then ending the statement with something totally unconnected with the beginning. And he acts like he said something really, totally correct and understandable! I just nodded my head and we went on to lunch or I say, yeah! If my mom had been in the room, she would have egged him on and made him try to explain what he was really trying to say.
She is in the stage where she thinks that she can help him either stay the same or make him better. Like she helps him count change at stores and restaurants (big line behind us!) I am behind them, saying, just give them one of your $20.s dad. And she also trys to help him play solitaire and dominoes. I really think that it is a learning (or not learning) experience for both of them!!! What can you do but laugh!!!!! :> Is better than crying. Or arguing.
Take care everyone. And have a nice trip Martha. Pop in every now and then. We need your expertise!
Love, Wannabe
Martha H
03-11-2006, 09:29 AM
My brother sent email last night, after my phone conversation with Mom.
He said that for quite some time she has been thinking she is at a Senior Center. She used to be a very active member and volunteer at a large Center in Astoria, and in some ways it was similar - they ate together, had Bingo and other activities, an occasional bus trip. The problems started when Mom got "confused" and couldn't remember how to get home, whether or not she had bought a bus ticket, etc.
Now her life is so much simpler. She thinks she's at a kind of live in senior center. She doesn't have to figure out how to cook her oatmeal or make her coffee, or what to wear. She doesn't have to find the bus stop or have an unwanted person with her to show her the way. She eats in a dining room with other residents, all of whom she now sees as 'old friends'. She enjoys the entertainment with them and at night goes to bed in her own room. She hasn't asked to go home for over a month. She IS home!
Needless to say she is not 'walking around without even a cane." That was pure fantasy. Nor is she doing sit down exercises with a group every day - that was a year ago when she still lived with me! But she is happy to talk about her wonderful day, and really enjoys everything she does (or imagines she does!) . She has no idea it is a nursing home.
This is now stage 5 well into 6. What better solution? At home she would be alone and bored. A family member would have to lift her into the wheelchair, bathe her, change her diapers. Nurses do this, and it has become a routine. She seems not to feel any sense of embarrassment for being incontinent.
Love,
Martha
He said that for quite some time she has been thinking she is at a Senior Center. She used to be a very active member and volunteer at a large Center in Astoria, and in some ways it was similar - they ate together, had Bingo and other activities, an occasional bus trip. The problems started when Mom got "confused" and couldn't remember how to get home, whether or not she had bought a bus ticket, etc.
Now her life is so much simpler. She thinks she's at a kind of live in senior center. She doesn't have to figure out how to cook her oatmeal or make her coffee, or what to wear. She doesn't have to find the bus stop or have an unwanted person with her to show her the way. She eats in a dining room with other residents, all of whom she now sees as 'old friends'. She enjoys the entertainment with them and at night goes to bed in her own room. She hasn't asked to go home for over a month. She IS home!
Needless to say she is not 'walking around without even a cane." That was pure fantasy. Nor is she doing sit down exercises with a group every day - that was a year ago when she still lived with me! But she is happy to talk about her wonderful day, and really enjoys everything she does (or imagines she does!) . She has no idea it is a nursing home.
This is now stage 5 well into 6. What better solution? At home she would be alone and bored. A family member would have to lift her into the wheelchair, bathe her, change her diapers. Nurses do this, and it has become a routine. She seems not to feel any sense of embarrassment for being incontinent.
Love,
Martha
LuvMyLilDoggie
03-11-2006, 09:35 AM
Martha, are you flying out of Chicago? We'll be thinking of you. Don't forget your camera and lots of film if you don't have a digital camera. I say this because I ALWAYS forget my camera and have to buy disposables.
Yes, I see why it would be so easy for Moo to stay in denial. But if I remember correctly, she saw the proof herself on her visit to NY and still denied that mom was as bad off as she is and that she could come home (or three homes) and life would be just fine and grand. That's why I think deep down she's really scared. She doesn't want to know how bad off mom is. If she admits it, she would have to face her own fears.
We, as caregivers, had to face reality and accept it for what it was when we took the role as caregivers. We didn't have time to face our possible fear of getting this disease but somehow, we worked through it. We know that this disease can affect anyone. We know it can happen to us. But we're better prepared than our loved ones were. We know what we went through; the tough decisions like whether or not to place our loved ones in a NH and such, the Medicare and Medicaide nightmares, the lack of support from family members, the sleepless nights with worry and sundowners, the physical and mental strain, the bumps and bruises. So we make decisions for our future and get all our ducks in order so that if we ever get this awful disease, those grueling decisions will not be placed on our children to make. We will have made them already. Sure, we'll still need help. But we'll relieve our children of the guilt of having to make those tough decisions and following through with them.
Sorry-got off the subject. What I was trying to say is that E, being so removed from the everyday life of mom with AD, is afraid. And the only way to push the fear of her possible future aside is to keep the denial as stong as possible for as long as possible if that makes any sense. :)
So pity her if you wish. But don't take what she says to heart. Remember that she is a victim of her own fear.
Love, Barb
Yes, I see why it would be so easy for Moo to stay in denial. But if I remember correctly, she saw the proof herself on her visit to NY and still denied that mom was as bad off as she is and that she could come home (or three homes) and life would be just fine and grand. That's why I think deep down she's really scared. She doesn't want to know how bad off mom is. If she admits it, she would have to face her own fears.
We, as caregivers, had to face reality and accept it for what it was when we took the role as caregivers. We didn't have time to face our possible fear of getting this disease but somehow, we worked through it. We know that this disease can affect anyone. We know it can happen to us. But we're better prepared than our loved ones were. We know what we went through; the tough decisions like whether or not to place our loved ones in a NH and such, the Medicare and Medicaide nightmares, the lack of support from family members, the sleepless nights with worry and sundowners, the physical and mental strain, the bumps and bruises. So we make decisions for our future and get all our ducks in order so that if we ever get this awful disease, those grueling decisions will not be placed on our children to make. We will have made them already. Sure, we'll still need help. But we'll relieve our children of the guilt of having to make those tough decisions and following through with them.
Sorry-got off the subject. What I was trying to say is that E, being so removed from the everyday life of mom with AD, is afraid. And the only way to push the fear of her possible future aside is to keep the denial as stong as possible for as long as possible if that makes any sense. :)
So pity her if you wish. But don't take what she says to heart. Remember that she is a victim of her own fear.
Love, Barb
Martha H
03-11-2006, 12:01 PM
You're right, she must be afraid. A fear so great that it blinds her to reality.
No. I'm flying from South Bend to Detroit, then to Amsterdam, and from there to Dusseldorf.
I do have a camera packed and I can get film there.
It's a spring like day here, with birds singing - big change from just last week!
I'll keep in touch as much as possible,
love,
Martha
No. I'm flying from South Bend to Detroit, then to Amsterdam, and from there to Dusseldorf.
I do have a camera packed and I can get film there.
It's a spring like day here, with birds singing - big change from just last week!
I'll keep in touch as much as possible,
love,
Martha