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Old 01-16-2009, 05:27 PM   #1
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families of ALZ patients go through stages too?

hi all, i have been on this wonderful board now for a while and have read all your trials and tribulations in dealing with your loved one with Alzheimers. i have read all the literature regarding the stages of ALZ. But it struck me lately that the families (specifically the children and spouses) of ALZ patiets seem to go through a set of their own stages.
I know when my mom was first diagnosed i felt total denial (she's not that bad) then frustration at the medical industry for maybe?? not having a magic pill. then anger cause oh com'on now she's just faking it? Then exasperation cause you can't possibly ask this same question THAT many times a day. then discipline like she's a two year old and she'll do as i say cause it's good for her. then finally acceptance....she's not doing it to annoy me, or get attention, or, or, or...it's gonna get worse, isn't it? and she's not faking any of the hallucinations nor is she in any way enjoying this...and well i have to stop thinking like she is even capable of being in my world any more, and it's really not her fault.
Any of you guys go through anything similar to this?
I am an only child so i have been alone in these stages that i have gone through, but those of you with siblings have to deal with your siblings maybe going through different stages at different times than you, thus compounding the problem of inevitable acceptance? Does this theory hold any water with any of you??? just wondering...Lori

 
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Old 01-16-2009, 06:00 PM   #2
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Re: families of ALZ patients go through stages too?

Quote:
Originally Posted by upatnite58 View Post
hi all, i have been on this wonderful board now for a while and have read all your trials and tribulations in dealing with your loved one with Alzheimers. i have read all the literature regarding the stages of ALZ. But it struck me lately that the families (specifically the children and spouses) of ALZ patiets seem to go through a set of their own stages.
I know when my mom was first diagnosed i felt total denial (she's not that bad) then frustration at the medical industry for maybe?? not having a magic pill. then anger cause oh com'on now she's just faking it? Then exasperation cause you can't possibly ask this same question THAT many times a day. then discipline like she's a two year old and she'll do as i say cause it's good for her. then finally acceptance....she's not doing it to annoy me, or get attention, or, or, or...it's gonna get worse, isn't it? and she's not faking any of the hallucinations nor is she in any way enjoying this...and well i have to stop thinking like she is even capable of being in my world any more, and it's really not her fault.
Any of you guys go through anything similar to this?
I am an only child so i have been alone in these stages that i have gone through, but those of you with siblings have to deal with your siblings maybe going through different stages at different times than you, thus compounding the problem of inevitable acceptance? Does this theory hold any water with any of you??? just wondering...Lori
Wow, exactly. Everything you wrote I am thinking. I have learned so much from this board. I finally feel the relief. I can see clearer. Do you know what is different? I read the books and researched d and alz. I really didnt "get it" until I read everyones posts here. From "real people" on what they were going thru and their experiences. Yes everyone has different opinions but until you talk to someone that is or did go thru with it, you dont actually "get it" of how the dementia or alz people are.

Cheryl
I am still learning and will always be learning till the end.

 
Old 01-16-2009, 11:32 PM   #3
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Re: families of ALZ patients go through stages too?

Absoluely upatnite.... I know I have been through most or all of those. We knew something was wrong with Mom but blamed it on depression. My denial came to an abrupt halt when I figured out that she had overdosed Dad on Xanax and then heard her tell her friends he had another heart attack. I went home to help her with him in the hospital because somebody had to stay with him 24/7. That was the weekend I came to the realization that mom doesn't remember. The doctor would leave and she would complain that the doctor had not been there. She ask us to change Dad's doctor and then didn't remember it. At that point all the pieces few into place for me. But I also had the benefit of working in elderly care prior to that. That was two years ago. I was the one that took Mom for testing and a diagnosis. Then I was totally frustrated by her doctor and his lack of knowledge on the subject. I have been frustrated by so many things that seem to move so slowly. I did try to keep Mom and Dad at home but finally realized that it was not the best for them. I agonized over moving them. I second quessed my decision when they were slow adjusting. I blamed it on other things but them and then finally realized it is just what it is. Now I am reconsidering the dementia medications and their true benefits.... though I was the one that told Mom about the Namenda when it came on the market.

We all have a learning curve and an acceptance curve. With my siblings we have all been at different places at different times. Sister 2 is in some way ahead of my curve. I think she actually reacts a little too fast. Sister 3 is behind me but listens. Sister 2, bless her heart, is in her own zone somewhere. It does cause conflict and makes the situation worse instead of better because you do tend to doubt yourself, especially at first, when others are seeing what you are seeing and coming to a different conclusion.

So I do agree there are stages of adjustment and as with anything, we go through them at our own speed and in our own time.

Love, deb

Last edited by Gabriel; 01-16-2009 at 11:32 PM.

 
Old 01-17-2009, 05:12 AM   #4
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Re: families of ALZ patients go through stages too?

You are so right upatnite. I felt completely in a tailspin at first. Still do at times. Its a rollercoaster ride on Planet Alzheimers or Dementia whatever the case may be. Sister 1 is the toughest one to convince. Denial Denial.........She finally knows but I don't believe she will ever accept how really bad Mom is now. Sister 3 and I accept things as they are. Hate it...but accept it.

I was very angry at first. Why??? That was my first reaction with a little denial in the mix. Mom does not deserve this horrible thing happening to her. Well, Who Does???? When the Dr. first told me I came home from the hospital and had a crying fit. I haven't cried that hard since I lost my first son. It broke my heart. I knew what was going to happen to her and what I had to see her go through. I had just lost Gram after watching her decline until she couldn't see or talk or even swallow. She finally was gone and I thought I was free from the pain of watching my LO go through this horrid decline. It was not to be. I was angry for me. I thought "I can't believe I have to do this again". That made me feel selfish. I found this site and my dear friends here told me that was a normal reaction. What would I do without my friends here?? I can't imagine. I could always "fix' things for Mom whatever the problem. After a few years I had to realize that I couldn't "fix" this one.

Some days I'm not up to the task. But I go and do what I have to do. Take care of Mom the best I can and leave her there at AL. I don't cry on the way home any longer. Some days I still wait as long as I can to go. I don't want to watch what is happening. I don't want one damn thing to do with it. But when I get there I'm so glad to see her. Frustrated....is the word that best describes how I feel the biggest part of the time. Just when I think I can relax about her and she is doing well........shes ill again. We have had so many hospital stays. That time is the worse. She is completely confused and drives me totally crazy. Because I don't want her to be afraid. After those times I'm exhausted. She has no idea after one day that she was even there. "When was I in the hospital. I haven't been in the hospital have I'?

I swear its making an old lady out of me. LOL Its worse when she is ill.... like now. I can't sleep. Maybe 4 hours or so then I'm up. My sweet husband helps me hang in there. LOL He knows how much I love her and how stressed I can get. He loves her too. "Let it go honey, your doing all you can do". Then I'll try to let go and chill. I'll be glad when we can open the lake house and get away from time to time.

OK, I'm rambling again. Bye ladies.

Love to all,
Chris

 
Old 01-17-2009, 06:39 AM   #5
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Re: families of ALZ patients go through stages too?

Ashamed to admit it, but when I first sent out the SOS cry for help on this Board, and people wrote back saiyng Mom needed to be in a Nursing Home , I was furious! Mom is ''not that bad" .. she just can't be left alone for one minute day or night, wanders off, burns pots, takes too many or no pills, can't wipe herself after toileting, wears odd clothes, forgets everything, gets lost etc .. she is NOT suffering from Dementia,..... or is she?

It didn't take long. When 3 then 5 then 8 people all agreed that Mom was in stage 4 to 5 I finally accepted it. My brother knew it already. He and his wife were experienced AD caregivers, having taken care of her mother for 13 years.

My sister never 'got it'. She is still in denial. Mom was put in the NH ONLY because of her broken hip and inability to learn to walk, and that was ALL. She never had dementia. According to sister.

I guess some of us are open to learning, others not.

God bless you all.

Love,

Martha

 
Old 01-17-2009, 09:26 AM   #6
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Re: families of ALZ patients go through stages too?

Hmmmm...absolutely great post!

You've brought up an important part of this disease upatnite58! Most often our posts here discuss the changes of our loved ones...not the changes this disease brings to US and our family.

It just makes sense that ANY disease or change in ones health can make a difference and cause family members to go thru "stages"...cancer, etc. The fact with Alzheimer's though, seems to be it is just such a long, long process.

I sure agree about family members easily being at different stages! There are 6 of us...and this has been one of the main challenges. Now that we're near the end with Mom (10 years after diagnosis) we're pretty much on the same page...but it has been a horrific journey that has fractured my family.

I had not thought about US going thru stages........interesting......Pam

 
Old 01-17-2009, 03:23 PM   #7
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Re: families of ALZ patients go through stages too?

Well, here is one thing I feel I can speak on with Authority!

In the dictionary, under "denial"...go ahead - look it up - it says "See Skimps"! I was another one that believed that daddy was "not that bad". Or was he? Oh, sure, he doesn't have a clue as to my name or relationship to him. And yeah, he pees himself all the time. Oh, and sure, he has no idea what day, date, year, century, city, state, country he lives in. But sheesh - he's 82 years old! And yes, I have had to disable the stove so he doesn't burn down the house. But dementia? Pshaw. Not MY daddy!

It's been a long hard road. For ME. I finally know, thanks to some real deep prayer and advice from people who do know. Dad is a stage 6 dementia patient, and since he is losing the ability to walk, headed into stage 7. The final stage. And I still fight the denial. Even now. Even when I am wiping his bottom. Even when I am cutting his food. Even when I am convincing him not to feed the fat stupid dog his lunch. Yes. Even now.

Because sometimes, he is "in there". Sometimes, he seems almost ok for a minute or two. Sometimes, he makes sense. So maybe we are all wrong. He is fine, yeah? Uh, no.

Yes. It's stages. And the lines blur between stages. I never knew when I took this job on that it would be harder on me than on daddy. If I had known, I would have still done it, because I love the man. But I would have been better "armed" with information and a support system.

Hang in there. After all, what choice do you have?

...lil' deb

 
Old 01-17-2009, 08:17 PM   #8
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Re: families of ALZ patients go through stages too?

and you have come a long way lil deb!

And then they die....

And you ask yourself...did I do enough? Did I ask the right questions? Did I do the right things? DId I do enough? Too much, too Little? Should I have done more? Did I get enough help for them? Was it in time? Should we have moved them earlier/later? Was that doctor good enough? Did Mom suffer? Should I have changed her meds earlier? Should I have challenged that other nurse? Was it worth a fight over that room? What about that other staff? Should I have moved daddy? Did I do it right? Did he know how micu I cared? Did they know how much I loved?

do they know how much I miss them?

 
Old 01-17-2009, 08:41 PM   #9
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Re: families of ALZ patients go through stages too?

And you ask yourself...did I do enough? Did I ask the right questions? Did I do the right things? DId I do enough? Too much, too Little? Should I have done more? Did I get enough help for them? Was it in time? Should we have moved them earlier/later? Was that doctor good enough? Did Mom suffer? Should I have changed her meds earlier? Should I have challenged that other nurse? Was it worth a fight over that room? What about that other staff? Should I have moved daddy? Did I do it right? Did he know how micu I cared? Did they know how much I loved?

do they know how much I miss them?


ibake, you made me cry. And everyone, everywhere needs to read that post of yours. It's the questions we all ask. It's the worries we all have. And it's the sure-as-I'm-sitting-here surity that we are all doing it wrong. And then our loved ones die. Hopefully, before we do. And we continue to question - to torture ourselves - and there are no answers. No pamphlets to give us A B C directions. No one to tell us that we are doing a good job.

And no, ibake, I don't think they know how much we miss them. Sadly.

...lil' deb

 
Old 01-17-2009, 09:11 PM   #10
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Re: families of ALZ patients go through stages too?

Here is a thread I found on the

TheAlzheimerSpouseMessageBoards

Thread title:
7 Stages of a Caregiver

In responding to Divvi under a different discussion, I thought that maybe this subject should have its own title....



Divvi, you are right. We need to do the 7 stages of caregiving! I am going to write the basics of those stages. Everyone, please add to each stage for us all........(I may have gotten some of them wrong...correct me, please!)

1. Realizing that your spouse isn't acting and reacting to things the way that they always have. Watching those changes and trying to discuss the changes with them. Finding out that they don't see those changes even when they have been pointed out to them. Sometimes they seem like a different person and you wonder if something is wrong with your marriage.

2. Making notes of the changes in personality, memory loss, verbal response loss, other symptoms and other physical problems your spouse may have and watching your spouse more closely to try and figure out what could be wrong. Seeing them hide things and change their eating habits. Seeing them get frustrated without their knowing why. Noticing that their visual perception is off.

3. Researching on the web to see what these symptoms mean. Calling the doctor's office and making the "annual checkup" appointment and going with your spouse. (Sometimes it takes several appointments and tests to get a diagnosis.) Trying to maintain a normal lifestyle when this stranger is living with you. Your loved one occasionally returns to be with you for short periods of time.

4. At spouse's stage 4, you know what is wrong with your spouse and you start trying to make certain that your spouse gets the correct diagnosis. At this point, spouses sometimes get fired, or have fender benders, or take the wrong way to the store, and other similar occurrences. You know that you have to make certain that you have the legal and financial documents in place while your spouse can still sign.

5. You realize that you have to take over the full responsibility for everything, including your well being, his/her well being, the houses, the cars, the purchases, the repairs, etc. You wonder if you are up to it. You do the math and realize what you can afford to do and what you can't. You start researching alternatives for their care in case something happens to you. You begin mourning the loss of your spouse and your marriage.

6. As your spouse loses abilities, you pick them up and add them to your load. As you see that he/she can no longer stay alone, you make the necessary arrangements. You mourn more. If you are one of the more fortunate caregivers, you have discovered this site and know that you are not alone and get help from others who have answers that you didn't even know the question for. You shift your priorities, change what is important to what is vital.

7. As your spouse reaches stage 7, you realize that the person you have loved and cared for is at the end of his/her road, and you mourn even more for your loss. Realizing that he/she is on their way to a better place, you miss them even though the body hasn't given up the fight. You try not to feel guilty. You try not to second guess yourself. You need to know that you have done everything in your power to give them all of the love and care that they needed and you have received their love and gratitude (though most can't express it) for taking such good care of them. You need to make certain that you take good care of yourself while dealing with this long goodbye.


I am not a spouse, but every thread helps when it comes to AD!!

 
Old 01-17-2009, 10:41 PM   #11
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Re: families of ALZ patients go through stages too?

Little deb.... it is so good to see you typing again... I will say it again, I have missed you...

IBake... we don't wait until they are gone to question ourselves. I do it daily. I think it is such a huge part of care giver stress when you are caring for a patient that has a disease you know wil not get better but you still hope, and don't have a guide on what to do or how to do it. Rather than being concrete it's all subjective and therefore open to doubt.

If Mom has cancer you give her chemo, sugery, radiation, medication, and you have hope of remission. You have a medical protocal to follow and something is being done that can make it better. With this disease, you do all you can while you watch them get worse and know you can't stop it, yet you wish and prayer..

looking.... thanks for that post. I can see myself in many of those steps and it gives me a glimmer of what is to come.

Love, deb

 
Old 01-18-2009, 06:14 AM   #12
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Re: families of ALZ patients go through stages too?

thank you ladies for all your wonderful responses and i bake..you made me cry too. a few of you brought up things that i should have said as well, like saying to myself "do i have to go through this again?" my grandmother lived with us when i was a teenager and was in the late stages and at the same time my father was suffering from what was later diagnosed as "alcohol related dementia", so that feeling of dread when mom starting forgetting things is something i remember too clearly. Also the brief moments of clarity they can experience give you a fleeting sense of hope that maybe? they are still there. but no, they're not. the idea of the 7 stages for caregivers is an awesome one, i know i sure could have used it back then. but it is actually everyone on this board that helped me through this (ongoing) experience. you have trully helped me take it in stride. i know that without this board i would probably be completely insane now (instead of the partially insane that i always was,LOL). so Thank you to each and every one of you, and i was wondering if i might be able to get one of those towels? and perhaps a glass of wine???? Lori

Last edited by upatnite58; 01-18-2009 at 06:15 AM.

 
Old 01-18-2009, 07:09 AM   #13
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Re: families of ALZ patients go through stages too?

Now listen here ibake stop being so wise. Stop hitting the mark. LOL Add me to the list of people that cried. Anymore, I cry at the drop of a hat. But that post was a 4 kleenex whopper !!!!!!! So true, so true...........

Love, Chris

 
Old 01-18-2009, 10:46 AM   #14
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Re: families of ALZ patients go through stages too?

And I had to wipe tears as I read it again. But the message to me is a happy one. Ibake threw out all the questions but is a shining example of the fact that we are doing the best possible for our loved one and have the guidance of those that have gone before to help us make those decisions. That is what gives me the hope I need. That is what gives me that little confident smile. Those of you that have gone before, know the questions we ask, and have done it well, are what gives us our confidence!!!..... and I thank you for that.

Love, deb

Last edited by Gabriel; 01-18-2009 at 10:47 AM.

 
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