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Joined: 1/14/2015
Posts: 40463
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Originally posted by: Ruby Tuesday
How many times does it take one woman to hit her head on the wall before she realizes it hurts? Apparently it is infinite.
Why do I keep trying to reason with DH? He wants to know why our relationship isn't the same? I try and explain that we both have changed but that I will always love and take care of him. He starts with the delusions (I have a boyfriend, I am using him for his money, I use his memory loss against me and the truly ironic statement "you are driving me crazy," His delusions are driving me crazy.
It hurts me, I cry. He then looks at me 3 minutes later and asks why I am crying. Seriously.
I have to steal my heart to him because he truly has no sense of concern for me any longer, he doesn't understand.
How do I learn not to care so that I will stop trying to explain to a man who cannot understand the pain this is causing me as well.
I really want to know how to get used to this so that I can answer a question and move on. No hurt, just a steal heart that still loves the man he was - but won't let the man he is now hurt me.
How? Forgive me, just one of those nights.
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Originally posted by: RevSasha
The key for me is to just keep telling myself "it's the disease talking." You are right, you cannot reason with the disease, it has no conscience. But he still does, somewhere in his clouded mind. The pain you feel will pass. Continue to listen with your heart to his sadness, it's not easy to realize that your brain is dying a piece at a time. Our once proud and productive DH's are slowly losing their abilities, that makes me very sad, just imagine what it must be like for the conscious part of him. Only love and compassion will help us overcome our own upsets and hurts. In my wedding ceremony, as the couple lights their Unity Candle, I say, "remember the love that brought you here today." I know it hurts when they say and do things that are not true and usually out of character. We recite the Serenity Prayer daily.
God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
Take good care of yourself. See this disease as an entity that has invaded your relationship. Be brave in standing up to it whenever you can by choosing love first.
Blessings, dear one, you are not alone on this long and awful journey.
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Originally posted by: Linda Dianne
Hi Ruby
Sorry to hear what you are going through. I will keep you in my prays.
I know my husband mind is going day by day and some time mintue by mintue. But i do know in this heart he still loves me and that will never change. I thank God for that. I also do not get to hear this voice to much anymore. I may get a word a day out of him. This I think for me is the hardest cause I can not ask him something and get feed back on it.
God bless you. Your sis in alz Linda Dianne
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Originally posted by: cloudspn
Ruby, I have exactly the same thing going on.
Men come through our house to have sex with me etc. This AM it was just that many more people were in our bed. Then he complained he can't see me as I face the other way.
It is so painful. I feel I cry because I realize he is sick and will not get better. I feel it will take a long time to come to terms with the illness itself.
I just praised My DH for doing very well and he is like a new man. Talking away as I type. He is going over the trouble he has finding things. They seem to need so much attention and loving as I know I would want too.
I'm not answering your question very well as I have the problem too. Hang in there ,hugs!!!
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Originally posted by: meeko11
Ruby Tuesday I hear you. No answer to your riddle.
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Originally posted by: Ben's wife
Linda Dianne, I can truly understand what you're saying. Right now I have so many decisions I have to make, and I can't even use him as a sounding board to help with them. We had to leave our home to move closer to family, that hasn't sold after 3 years. He could always do everything needed in maintaining a house, now I have to hire it all done, and being a long distance landloard because I'm having to rent the house until I sell it, is a real hassle.
Sometimes I think that if I could only discuss this with him, it would help. I'm tired of making all the decisions myself. I'm so thankful that my husband remains loving, although he hasn't a clue who I am, just thinks we live in the same house. Seldom calls me by name anymore.
I just keep thinking back to how horrified he would be if he could see what he's become.
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Originally posted by: GMCM
More and more I am forcing myself to physically walk away from my husband when he starts his "motor mouth" and/or abuse. 5 min. later I'll go back into the room and he'll act as if it's the 1st time he's seen me. He physically fights me if I try to do anything for him that he doesn't want done so I choose only to fight those battles that are absolutely necessary (toileting issues), etc.
Question: in these later stages, does medication really help at all? He's sleeping more, refusing meds, and chews the ones I can get in him. Even so, doesn't seem to make a difference one way or the other. His sleeping and hallucinating are keeping him very occupied lately which is a "relief" for me....I can stay busy with productive things to do that help me feel good. I think I'm past the guilt at this point.
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Originally posted by: T Decker
I am new to this blog. I am sitting here with tears in my eyes because I know now that I am not alone. There are others who know what I am going through and feel what I feel. Thank You.
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Originally posted by: Ruby Tuesday
[QUOTE] Only love and compassion will help us overcome our own upsets and hurts. In my wedding ceremony, as the couple lights their Unity Candle, I say, "remember the love that brought you here today." I know it hurts when they say and do things that are not true and usually out of character. We recite the Serenity Prayer daily.[QUOTE]
ReSasha, this brought a tear to my eye! I DO remember lighting that candle. When I read this I remembered how happy and in love I was, and more importantly...my vows.
I remember the man I married that day. He is in there somewhere.
Thank you everyone for your responses. It does truly help to know others are in the same (torn and tattered) boat that I am in. We will make it.
Prayers to my online family. THANK you!
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Originally posted by: cloudspn
quote: Originally posted by T Decker:
I am new to this blog. I am sitting here with tears in my eyes because I know now that I am not alone. There are others who know what I am going through and feel what I feel. Thank You.
Welcome T Decker, you are certainly not alone. This is a good forum.
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Originally posted by: Ben's wife
GMCM What stage is your husband in? Mine is in the early stages of 6
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Originally posted by: Ben's wife
Welcome, TDecker - There are indeed many people who are going through the same things. While this doesn't lessen our pain, it does make it a bit easier to understand and live with. There are days when I have a lot of patience, and those when I just have to occupy myself in another room to avoid saying things that I will regret later. I know he's finding this as difficult to live with as I am, or would, if he could see the way things are. Most of the time that reason works with me, but once in a while, it's best just to walk into another room.
We're all in this together, and together we have strength.
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Originally posted by: meeko11
T Decker-while we can't change much it really helps that others are going through the same misery and that you are not alone.
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Originally posted by: GMCM
Hi Ben's wife -- my husband is kind of mixed between the last 2. He's 73; I'm 58. I'm still able to take care of his needs; he still can walk and will eat when he's hungry (I chop everything and put in a bowl so he eats with a spoon). Some meds I can disguise if I mix with "crunchy" food, but he takes many medications, most of which are capsule form. Like I said, I'm really not seeing a difference in his behavior with or w/o them. Thanks for responding. Whew!
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Originally posted by: Cathy J. M.
quote: Originally posted by Ruby Tuesday:
He wants to know why our relationship isn't the same? I try and explain that we both have changed but that I will always love and take care of him.
I think I'd want to know the same thing: why isn't the relationship the same or better?
I think trying to steel our hearts against the "new" partner or spouse is just making both people miserable. Better to express your anger and hurt elsewhere (here is fine; a personal counselor even better) -- and work on developing unconditional love, with no expectation of consideration or love in return. If nothing else, that's something we can get from this experience -- and it may be more valuable than anything else in the world.
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Originally posted by: Gloria P.
quote: Originally posted by cloudspn:
Ruby, I have exactly the same thing going on.
Men come through our house to have sex with me etc. This AM it was just that many more people were in our bed. Then he complained he can't see me as I face the other way.
It is so painful. I feel I cry because I realize he is sick and will not get better. I feel it will take a long time to come to terms with the illness itself.
what is a DH?
I just praised My DH for doing very well and he is like a new man. Talking away as I type. He is going over the trouble he has finding things. They seem to need so much attention and loving as I know I would want too.
I'm not answering your question very well as I have the problem too. Hang in there ,hugs!!!
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Originally posted by: Gloria P.
quote: Originally posted by T Decker:
I am new to this blog. I am sitting here with tears in my eyes because I know now that I am not alone. There are others who know what I am going through and feel what I feel. Thank You.
im new too and there are tears in my eyes.
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Originally posted by: Gloria P.
quote: Originally posted by Ruby Tuesday:
How many times does it take one woman to hit her head on the wall before she realizes it hurts? Apparently it is infinite.
Why do I keep trying to reason with DH? He wants to know why our relationship isn't the same? I try and explain that we both have changed but that I will always love and take care of him. He starts with the delusions (I have a boyfriend, I am using him for his money, I use his memory loss against me and the truly ironic statement "you are driving me crazy," His delusions are driving me crazy.
It hurts me, I cry. He then looks at me 3 minutes later and asks why I am crying. Seriously.
I have to steal my heart to him because he truly has no sense of concern for me any longer, he doesn't understand.
How do I learn not to care so that I will stop trying to explain to a man who cannot understand the pain this is causing me as well.
I really want to know how to get used to this so that I can answer a question and move on. No hurt, just a steal heart that still loves the man he was - but won't let the man he is now hurt me.
How? Forgive me, just one of those nights.
oh my God this is the first time on alz chat and this is the first note i have read and how i empathize with this. my heart goes out to you and yesssss i do understand. i know this doesnt make it better. but not to worry , you are a good wife. i think i am too most of time. butttt oh the pain.
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Originally posted by: Cathy J. M.
quote: Originally posted by GMCM:
He's sleeping more, refusing meds, and chews the ones I can get in him.
His brain specialist and/or pharmacist can advise you on which medications can safely be crushed and mixed into foods. As far as I know, this is something we all will probably have to do as the disease progresses.
As far as the decision to stop the AD meds goes -- I'd consult his brain specialist and consider the pros and cons. Unfortunately the results seem hard to predict. From what I read here, some patients do better without them, others show no difference, and some decline sharply. The risk is the sharp decline; in some cases restoring the meds doesn't reverse the decline.
It's hard to get much sense of the statistics for pros and cons from the forum, because each of us posts what we observe from just our own LO. Maybe your brain specialist has better data from studies of thousands of people at different stages.
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Originally posted by: JAB
quote: Question: in these later stages, does medication really help at all? He's sleeping more, refusing meds, and chews the ones I can get in him. Even so, doesn't seem to make a difference one way or the other.
Maybe yes, maybe no. Studies have shown that the meds tend to help, on average, into the latest stages. They can help prevent or at least delay the onset of serious behavioral problems. They can also make it possible for the loved one to function better, even if not functioning well.
But ... some patients develop adverse side effects from them, and may actually do better if taken off. Others don't seem to be affected one way or the other.
The big problem is that you don't know which category your loved one might be in. And if taken off the meds and they were helping, the loved one can go into a steep decline. Putting him back on the meds will slow the decline, but not return the loved one to baseline.
This article talks about AD meds, and what they may or may not do for your loved one:
http://www.alzcompend.info/?p=244
This has ideas for helping our loved ones take their meds:
http://www.alzcompend.info/?p=136
If your husband is taking a lot of meds, it might be a good idea to do a thorough review of all of them, and see which might not be appropriate any longer, and whether there are any potentially adverse interactions among them. Many doctors feel that statins, for example, are very unlikely to be helpful to an elderly dementia patient. My husband's geri has culled a few of his meds, and switched his BP med ... and he's doing markedly better. Switching his BP med has helped him sleep less during the day and be more alert, much to my surprise. I'm keeping him on his AD meds because he responded so well when first put on them, and has done far better than his doctors (his brain specialists, as Cathy calls them) had hoped over the years. Still, I did adjust the doses when he started having gastrointestinal problems, and again, that helped.
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Originally posted by: meeko11
Gloria-welcome to the family. I doubt there is any more we collectively haven't been through. We are here to help each other.
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Originally posted by: Mimi S.
Hi Gloria,
Welcome to our world. We're so glad you found us.
Do tell us something about yourself and your situation.
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Originally posted by: JAB
Hi, T Decker and Gloria, welcome to the forum.
Please feel free to start your own threads, to tell us about you and your husband, ask questions, vent, share a joy or sorrow. To start your own threads, click on the "Start a new discussion or poll" button in the colored bar near the top of the page. A tiny drop-down menu will appear (you have to look closely!) with a single option, "Discussion". Click on that. This opens a dialogue box. Be sure that the forum in which you want your thread to appear shows up in the first line of the box. Enter the title of your new thread, and your first post, in the appropriate places. Then click on the "post now" button at the bottom right-hand corner of the box.
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Originally posted by: DLMifm
quote: Welcome T Decker, you are certainly not alone. This is a good forum.
Good forum filled with the best collection of caring and wonderful people.
Participation makes forums work.
DLM
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Originally posted by: Aminda
Ruby,it is not possible! To learn not to care. But you are right they don't understand. I am a caregiver for his 90 year old mother, who also has ALZ. I get her on Fridays and she goes home Sunday night. I have my six year old grandaugher from Sat to Monday. My weekends are very hectic so by Monday night all I want is to go to bed or just lay down and watch a good movie. Well he wants to go to bed with me, and hold me. All I want is peace. Leave me alone. I push him away and he get hurt, he does not understand. When he holds me, he hold me too tight and his body is too hot. He told me, if I want nothing to do with him I can leave anytime. Your right he has no sense of concern, I just want to rest, give me a break.
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Originally posted by: T Decker
quote: Originally posted by cloudspn: quote: Originally posted by T Decker:
I am new to this blog. I am sitting here with tears in my eyes because I know now that I am not alone. There are others who know what I am going through and feel what I feel. Thank You.
Welcome T Decker, you are certainly not alone. This is a good forum.
Thanks everyone. Now a question. My wife has Alzheimer's. She is 63, I am 61. I am a teacher. Right now she is early stage 5 (my opinion). It is time for me to go back to school. She wants to stay by herself. At what point is that not an option?
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Originally posted by: Cathy J. M.
quote: Originally posted by Aminda:
My weekends are very hectic so by Monday night all I want is to go to bed or just lay down and watch a good movie. Well he wants to go to bed with me, and hold me. All I want is peace. Leave me alone. I push him away and he get hurt, he does not understand. When he holds me, he hold me too tight and his body is too hot. He told me, if I want nothing to do with him I can leave anytime. Your right he has no sense of concern, I just want to rest, give me a break.
It's unreasonable to expect him to understand why you're pushing him away; of course he feels hurt and angry.
You're trying to do too much: your commitments to other people (your MIL and your granddaughter) are too much on top of your commitment to your husband. Something's gotta go!
Or -- another option is to give yourself your Monday night break by hiring someone else to stay with your husband while you go to a movie or rest at someone else's house. Or maybe the caregiver (or friend, for that matter) could take him out while you rest.
When the spouse or partner gets Alzheimer's -- it's my belief that our expectations have to adjust to reduce as much stress on them as possible -- which means lowering our own stress enough so we can be relaxed and caring and loving toward them without expecting the same thing in return. The whole dynamic of the relationship is new and different -- not bad, necessarily, but very different.
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Originally posted by: T Decker
Question. At what point can an Alzheimer's person stay alone? My wife is 63, I am 61. I am a teacher and it is time to go back to school. I believe she is early stage 5. There has not been any unsafe behavior but she sometimes gets anxious if she can't find me. She says she wants to stay alone (she did last year). I am not sure what to do. Advice?
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Originally posted by: DLMifm
quote: Originally posted by Cathy J. M.:
When the spouse or partner gets Alzheimer's -- it's my belief that our expectations have to adjust to reduce as much stress on them as possible -- which means lowering our own stress enough so we can be relaxed and caring and loving toward them without expecting the same thing in return. The whole dynamic of the relationship is new and different -- not bad, necessarily, but very different.
The dynamics of our relationship has probably improved overall. We are both paying more attention to each other in terms of reducing the others stress and the fact that we are both now different. The hitch is the LO's shortening memory and my ability to adjust to that particular change.
I know my stress level is just below the skin. With the push of a hot button it surfaces. Most of the time I catch myself and shut up.
One of our sons was visiting from the WCoast over the weekend.
I was so frustrated because he didn't understand my DW's AD dynamics and with her present there was no way to explain her words were not her words by a product of Alzheimers Disease. She was/is not to blame.
Being from Oregon he kept the conversation going towards midnight. She showed more sundowning and he didn't recognize the shift. (typical response when alone: stop blaming Alzheimners...)
DW was on her best behavior, dressed rather than him seeing her in a bathrobe, etc.
I know I can be relaxed and caring and loving toward her without expecting the same thing in return. AND Fortunately at this stage she is still able to return the caring and loving most of the time.
The test will come at end of month when he and two very active grand-kids (4 and 7) arrive for a 8 day visit.
Sorry if I ramble. (stress relieving in progress)
Dave
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Originally posted by: Starling
We are having the rather spirited discussion on another thread about leaving someone alone for 20 minutes or half an hour. I'm on the pro side if someone is at stage 5 and you believe the person still can handle being alone.
But 20 minutes is not 10 hours. I was a latch key child at 7. At 8 I was alone for 10 hours every day during the summer. I would not leave a stage 5 patient alone for 10 hours any more than I'd leave a child under the age of 12 home alone for that much time. Time for day care.
One other thing I have noticed is that both day care and ALF placement happen earlier when the primary caregiver has to go out to work to support the family. And that, believe it or not, is probably a good thing. In the case of day care the only way that works is to start early.
You do what you need to do to keep the patient safe. And as hard as that sounds right now, you need to do something different from what you did last year.
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Originally posted by: JAB
We are having a rather spirited discussion about this on another thread, T Decker.  It's one of the "hot button" topics on the boards. It's a very personal decision, and one only you can make, because only you know what symptoms your loved one has, what your living environment is like, and what support you have from your community. Well, and only you know how much risk you're willing to accept. Do you base your decision on "the norm", or do you consider what might happen in the event of an emergency? There are many factors to take into account.
Cathy JM posted a helpful link:
http://alzheimers.infopop.cc/e...434027008#4434027008
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Originally posted by: Ann Spouse of early-onset dementia
I liken it to try to reason with a drunk. First no reply or a curt answer such as: "I don't feel the same and I am sorry your feeling this way." Is often enough. Also, they often don't have a long attention span so they can forget what they said so the "no answer" might be key then dragging on a topic that is hurting. It is NOT YOU but the disease and if your able try to submerse yourself in something you enjoy when hurting things are said. Ex: bake cookies, read a book, take a bubble bath, step out and listen to the birds and enjoy the breeze on your face. It's not easy but gaining coping skills does help.
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Originally posted by: JAB
quote: We are having the rather spirited discussion on another thread about leaving someone alone for 20 minutes or half an hour.
We are? 20-30 minutes? "I only leave him for a few hours at a time." (Which is a bit of an understatement since this particular member had left her ADLO alone for the better part of a week in July -- and he'd gotten very upset and gone looking for her -- and said she intended to continue taking off for a few days every month, leaving him alone.) "I'm having knee replacement surgery then going into rehab for several weeks. I ask his neuro if he would be okay by himself, and he said yes, certainly." I don't think the fuss is about a few minutes. LCB's husband is very early stage, and she has a lot of backup in place, and she's thought things through carefully -- plus she's very experienced, having gone through this before. The same cannot be said for everyone else.
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Originally posted by: Aminda
quote: Originally posted by T Decker:
Question. At what point can an Alzheimer's person stay alone? My wife is 63, I am 61. I am a teacher and it is time to go back to school. I believe she is early stage 5. There has not been any unsafe behavior but she sometimes gets anxious if she can't find me. She says she wants to stay alone (she did last year). I am not sure what to do. Advice?
Welcome T.Decker. I know the feeling, that is how I felt when I found out there were more people going thru the same thing I was. I am 63, my husband is 65. He has been sick for 6 years. I still work and he stays home by himself. I am 5 minutes from home, so I go home for lunch, and I will take him out for a sandwish, or we go to the store. He is still able to dress himself and he showers about 3 times a day because he forgets he already took a shower. I have a phone in every room and I put a cell phone in his pocket. If I call and he does not answer, I go home to check on him. I leave notes when I have too. He is about stage 5. In Sept. I will be cutting back on my hours at work to part time, so I can spend more time with him. I believe that we are the only ones that can say at what point that person can stay alone!
All the neighbors know him, the city workers all know him, we have been here for 40 years, sometimes he rides his bike to see me at work, because he got locked out or just to check on me.
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Originally posted by: DLMifm
Anne:
You are so right on! "...liken it to try to reason with a drunk."
Their reactions mirror AD at times.
DLM
quote: Originally posted by Ann Spouse of early-onset dementia:
I liken it to try to reason with a drunk. First no reply or a curt answer such as: "I don't feel the same and I am sorry your feeling this way." Is often enough. Also, they often don't have a long attention span so they can forget what they said so the "no answer" might be key then dragging on a topic that is hurting. It is NOT YOU but the disease and if your able try to submerse yourself in something you enjoy when hurting things are said. Ex: bake cookies, read a book, take a bubble bath, step out and listen to the birds and enjoy the breeze on your face. It's not easy but gaining coping skills does help.
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