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Feeling helpless
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: LarryD

CynthiaJ

First, let me welcome you to this forum. There is a lot of help and encouragement here for you as well as the prayers of many of us.

There is so much negative information around now about this disease that to get a diagnosis of it, it would be hard not to become depressed. But there is time and drugs that should be taken advantage of to slow the progression as much as possible. You will hear of some who have been on this journey for many years and still going strong. Hold on to your hope.

There are also other forums for those with the disease and for those with early onset diagnosis in the Forum Index at the top of the page.

Hopefully your husband will pull out of the depression and agree to fight it with you and your kids.

We will pray for you and look forward to hearing how you are both doing.

LarryD
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Snorky

Cynthia, I'm so sorry about such an early diagnosis with your DH. It's got to be really difficult still raising children along with an AD spouse. Does he still drive? Can you tell him how much you need him to help with some household chores. I'm sure he's very depressed and that's why he's not active. Is he seeing a Neurologist? I know they lose their reasoning ability and mine has become very self-centered too which makes it hard to make them see that you need help. It's bad enough to have full charge of everything let alone having to raise children too!! Can you ask your daughter for help? Is she in denial about her dad? Some counseling might be a good idea for all of you. Have you talked to a Alz.support where you live? I can't get my DH to come up with anything to do either and whatever I suggest doesn't go over except he is putting some 100 piece puzzles together. I wish I could offer some better advise for you, I can only sympathize how difficult this has to be for you and your children.
Internal Administrator
Posted: Tuesday, January 17, 2012 5:20 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: CynthiaJ

My husband was diagnosed with alzheimer's in November. He is 58. I can't get him to do much of anything around the house. He doesn't try to do games, read, puzzles - nothing. I keep reading how important it is him to keep active but he doesn't want to do that either. We have a 20 year daughter and a 12 year son so I am dealing with all their issues too. My daughter is causing me lots of stress. Any suggestions for getting my husband to try things to help himself. It is pretty depressing around the house.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Rkg

Sorry I had another thought to add, The whole diagnosis thing is so fresh for all of you. You do have to step back take a breath and give your self's time to digest the elephant now in your room. Wink You have to start planning what you can for your future as well as arm yourself with info info info that will help you along this journey with your Dh.


The chaos of all of it, may as well be what is going on with your DH, diagnosis, Holidays and as you said stress around the house could be adding to the fact that he is getting depressed. Give it some time. Do try to find things that bring a smile to both him and your family's faces. It's hard work to find happiness along this journey but it can be done.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Cathy J. M.

You've gotten lots of good advice.

Next step, in my opinion, is to do whatever it takes to get a positive vision and attitude, yourself. Part of this will come with confidence that you know what to do -- which takes some time and study. (There are great books that can help.) Part of it takes reading encouraging books such as John Zeisel's "I'm Still Here." And you'll need help with your feelings.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Dorinne

Cynthia,

Do you think your Daughter (20 yr old) is old enough mentaly to get educated on dementia? She is probably so confused about her Dad's condition.

Both of you could support each other if she was willng to learn and understand dementia.

We are all here to support and help you in any way you need us. We are all going through the same thing. I have learned a lot just since Sept. 2010.

You have been given some excellent advice from Larry and Snorky.

Take care of yourself and your family, I know it is hard. (Hugs)
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Rkg

Cynthia, Welcome to the forums, sorry you had to find us.


You didn't say what stage your DH is in, and what if any meds he's taking. That will help us give you more suggestions.

I am sure your DH is shocked, scared and confused as to what is going on. First off he has a brain impairment that doesn't allow him to fully understand everything about this journey. He will most likely never get back to doing things around the house like he once did. Doesn't mean he can't still putter but you will find that his progress and "jobs" will just be done in AD time........ It's a different speed than we have.

As far as the puzzle, game thing my Dh didn't get into it either. My Dh was diagnosed at the age of 53 so I don't know if he just felt it was a waste of time or what. I just had to learn to let him help me with the projects and "I" had to learn not to get frustrated when his job/progress was not perfect. Unfortunately our DH's are now on AD time, it's different than our time! Let him do things that he use to enjoy, but realize the end result may not be perfect nor completed like he once would have.

I don't understand when you said your DH isn't doing anything to help himself? You do understand that this is a terminal disease? He may not be able to help himself. Can you and him work together to keep him as good as possible? Absolutely! There is many ways to keep your DH going strong for years to come.

One of the biggest things is reducing stress for him as well as yourself! You have to create a calm daily life. When things are stressed and chaotic you will find your DH spinning in his AD world. Keeping things on an even keel will go a long way to keeping this journey as easy as possible.

As for your kids, your daughter? hmmmmmmm Well she's 20, she's an adult so I would say straighten up or get your own place! You don't need added stress or drama. You have one hell of a journey ahead of you.

Your son, the tween (bless you!) That is a rough age just being a kid, but dealing with AD and being a tween/teen can't be easy. I would suggest a support group for him as well as yourself and your daughter if she's willing to attend. I also suggest looking for books on AD geared towards kids. It will help your son a lot to understand what this disease is and what it's about.

Arming yourself with as much information about this disease will help you the caregiver to survive it. Thougths and Prayers!
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Cathy J. M.

Sorry about abrupt end to last post -- partner needed me.

What I meant by "help with your feelings" is that most of us need counseling or other intimate, confidential support at first -- so we can deal with our own shock, grief and upset about this drastic change in our partners and our own lives. We have to let go of the vision we had for our lives, and create a new one that takes into account our new reality. It's a big project -- takes time but also lots of emotional processing that we can't do when with our loved one.

It's important to learn to be positive and happy with our loved one -- exactly as he or she is. Doesn't come overnight!
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: JAB

Hi, Cynthia, welcome to the forum.

Since the diagnosis is pretty recent, you may find the First Steps article helpful:
http://alzheimers.boomja.com/C...rst-Steps-61311.html

Dear, when you say you can't get your husband to do much around the house ... are you expecting him to figure out what needs doing, and then do it? Because it's unlikely that his mind works that way any more. Try something like a white board with a short, simple list of chores or activities for him to do each day. And it does need to be simple -- multiple step activities can be too complicated and frustrating for our loved ones. Or you may need to gently suggest a single activity at a time -- e.g., "Dear, would you please sweep this floor? Here's the broom." As the disease progresses, you will need to work alongside him, helping him with each step in a chore.

As for trying to help himself ... many ADLOs develop a symptom called "anosognosia", which is a lack of self-awareness. They genuinely do not realize that they have a problem, and therefore see no reason to do anything to "fix" it:
http://alzheimers.boomja.com/A...osognosia-32271.html

I have trouble getting my head around how you could truly not know you have problems ... but the first part of this essay helped me get a bit of a grasp on the concept:
http://opinionator.blogs.nytim...sognosics-dilemma-1/

Mimi's "Best Practices" are very good things to do. For several years, my husband and I went for a daily walk, a couple of miles, at a nearby park. It was great, for a lot of reasons -- the exercise was good for both of us, the beautiful park was relaxing and helped reduce stress for both of us, we were out in the sunshine (light therapy!)... See if you can't do something like that several times a week.

Resources for helping children and teens learn to cope:
http://alzheimers.infopop.cc/e...=283301283#283301283
http://www.alz.org/living_with...r_kids_and_teens.asp
http://www.alzheimersweekly.co...d-dementia-a507.html
http://www.alzinfo.org/alztalk/flashchat.php
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Mimi S.

Cynthia,
Welcome to our world. We're so glad you found us, but so sorry for what brings you here.

Someone asked what stage he is in. Those of us who are in the Early Stages, regardless of our age, seem to have a better chance of being proactive and slowing down the disease. We are willing to do what it takes: my Best Practices:
1. Take meds as directed.
2. Strenuous physical exercise.
3. Strenuous mental exercise
4. Maintain or increase socialization.
5. Mediterranean Diet. I also take Omega 3 and antioxidants.

It's been over 4 years since my diagnosis. I believe my cognition is better now than it was at diagnosis. But I work hard. And I'm not the only one on these boards who is slowing the slide way down. it's worth the work, and most especially for those of you a lot younger than I am.

Please have your husband join us on the
AD boards. And if you live in a Metropolitan area, you might be lucky enough to have a support group for either early onset or early stage.

Please call your local chapter of the Alz. Assoc. [hit chapters, below.)
Ask about support groups. Get to know them. They can become your best friend.

You can push and you can pull, but, I feel, the motivation has to come from him!

Good luck.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: ipoe

I was putting a new trash bag in the waste basket today and i handed him the bag andsaid, would you please put this new bag in the wastebasket? and so he did..just threw it in like it was a piece of trash..Kinda funny..i guess i just didnt explain it well enough..
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Snorky

Hi Justme, Glad to meet you on this chat forum. But I'm so sorry you have to be here with all the issues we have to face! Yes, my DH did the same as your husband the other day. I couldn't believe it because it has not happened before and he sure didn't remember doing it. Hasn't happened since. There are changes all the time and some are new and some repeated, you just never know, at least with mine. I have the anger issue to deal with as I had to again this morning. That's with him mad at the Drs. because he can't drive mostly and doesn't understand why. According to him, he's fine. I've found the last several days that we've been snowed in playing nice music is a real comfort to him.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: justme777

quote:
Originally posted by ipoe:
I was putting a new trash bag in the waste basket today and i handed him the bag andsaid, would you please put this new bag in the wastebasket? and so he did..just threw it in like it was a piece of trash..Kinda funny..i guess i just didnt explain it well enough..


Hi I am new here on the boards. I couldnt help but respond - that is so cute although I am quite sure very frustrating for you. I can't get DH to want to do anything either and his newest thing is urinating between the toilet and the tub on the floor. So sorry for what all you are going thru
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: justme777

quote:
Originally posted by Snorky:
Hi Justme, Glad to meet you on this chat forum. But I'm so sorry you have to be here with all the issues we have to face! Yes, my DH did the same as your husband the other day. I couldn't believe it because it has not happened before and he sure didn't remember doing it. Hasn't happened since. There are changes all the time and some are new and some repeated, you just never know, at least with mine. I have the anger issue to deal with as I had to again this morning. That's with him mad at the Drs. because he can't drive mostly and doesn't understand why. According to him, he's fine. I've found the last several days that we've been snowed in playing nice music is a real comfort to him.


Hello Snorky
Thank you for your reply and yep I too am sorry that all of you have to be here also. Well atleast I know I am not loosing my mind now.
Wow sounds like you to have your hands full. Mine had 4 strokes and a mild heart attack, so he isnt doing so well, now he has alz / demensia also.
I have to go for now his brother just came Wishing all a good day
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: b kelley

I too am feeling helpless-my husband was recently diagnosed with alz. he is just 63.He too will not do anything to keep himself busy at home.At times he is too confused to do them but other times he just won,t try. i am at my wits end,i try to be understanding but I find i loose my temper why too much.Am I alone on this or do you find yourself getting angey sometimes too?
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: meeko11

I think that one of the largest virtues of our forum is that it helps us to realize that we are not alone. Others are going through the same thing and here we understand each other. I wish this spouse/partner forum had been in existance when we were in the begining of our battle. I thought I was the only one.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: CynthiaJ

quote:
Originally posted by b kelley:
I too am feeling helpless-my husband was recently diagnosed with alz. he is just 63.He too will not do anything to keep himself busy at home.At times he is too confused to do them but other times he just won,t try. i am at my wits end,i try to be understanding but I find i loose my temper why too much.Am I alone on this or do you find yourself getting angey sometimes too?


I lose my patience and get angry some days. It really depends on what else I have going on. I keep telling myself I just need to get use to doing it all. It's hard to understand how someone can sit and do nothing but then I think its hard for women to do that when they are the ones use to taking care of a house and children and a job. We had been going to doctors for 2 years before we got the diagnosis. He is in what they say is the moderate stage. Lots of frustration. I do have a counselor I see on a regular basis to help me get through these times. She keeps telling me to do what is easiest for me. I think just doing it myself is easiest but when I read that it is important to stay active and do things, the 2 answers don't work. I appreciate all the responses and I don't feel as alone these days.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Mimi S.

quote:
As for trying to help himself ... many ADLOs develop a symptom called "anosognosia", which is a lack of self-awareness. They genuinely do not realize that they have a problem, and therefore see no reason to do anything to "fix" it:
http://alzheimers.boomja.com/A...osognosia-32271.html

This is from JAB's post above. As far as I can figure out, this is the main reason for their doing nothing but sit.

And yes, when you know activity can have so many benefits, it's hard to watch.

nNgging, as you've all found out, doesn't work.

Just blame it on the disease.

Another reason I push for Early Diagnosis. We then tend to get people motivated before the anosognosia sets in.

Any one have a different hypothesis?
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Mimi S.

Hi Cynthia and Just Me,
Welcome to our Forum. I'm so glad you have found us but so sorry for what brings you here.

This is a fantastic group of compassionate, caring, knowledgable people. So many of you caregivers have found our group today and you are already sharing your wisdom.

Are you getting respite? it's so important.

Thank you.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Ky caregiver

i know what you mean, I get so aggravated because my husband wont do anything except watch westerns all day. He plays Solitaire on computer sometimes. It is hard to get him to do anything!!
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Starling

Good girl. I failed with day care both times I tried it. Did not do it early enough. So glad you listened.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: SherylS

quote:
I can't get DH to want to do anything either and his newest thing is urinating between the toilet and the tub on the floor.


Mine was urinating down his leg between the birdseed section and the concrete yard art..... We were at Lowe's Hardware last night! Smiler
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: SherylS

Day Care was a good match for DH as he's always been very social...but had no hobbies. Now he can go and sit and 'talk' in his garbled fashion to other who may be better/worse than he is. He's found a new group of best friends Smiler
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: JAB

quote:
Originally posted by justme777:
I can't get DH to want to do anything either and his newest thing is urinating between the toilet and the tub on the floor.

Hi, Justme. Your husband may be having trouble seeing where the toilet is and/or aiming for it, due to a very common symptom called "visual agnosia." You can read up about that at:
http://alzheimers.boomja.com/A...-Problems-32392.html
http://alzheimers.boomja.com/A...d-Agnosia-35134.html

Try doing things that create more color contrast between the toilet and the floor, to make it easier to find the toilet bowl, e.g., putting painter's tape around the rim of the bowl, or colored water in the bowl, or a colored mat around the base of the toilet.

My husband, happily, has decided to sit down most of the time to go, now. His aim was getting quite hopeless...
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: SherylS

On advice I received on this board, I got my DH signed up for an Adult Day Care Center. He rides their shuttle. He's gone Tues and Thur for most of the day.

They have programs that stimulate their brain in addition to what I can try at home. They have socialization.

I was told here to not wait too long...get them going there sooner, rather than later!

I like it! I need it!
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Mimi S.

Fantastic!!
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: lurk

Cynthia, the "moderate stage" is so hard because they are continually transitioning, and we don't know what to expect of them. They (and we) also are trying to wrap our minds around the new reality.

I've found that the best way of coping is to read everything I can and ESPECIALLY on these message boards. Since every one is different, having real life examples from multiple posters is the best of the best!

For what it is worth, I bought myself a keyboard for Christmas, and DH was instantly intrigued. I bought a wonderful book called Alfred's Self-Teaching Adult Piano Course. It is so basic that it tells you that the keys below middle C have lower tones--my kind of book.

And I got us a music teacher, a never-married retired school teacher friend. She wouldn't take money so she comes to lunch. She knows him individually as well as me individually. She was so good with him. She spent the first day with really basic things and then tried and tried to teach him Peter, Peter Pumpkin Eater. He just couldn't get the rythym.

To my surprise, and at my suggestion, he began going through the book and picking things out. Today, I showed him Peter Peter . . . over and over again and tried to move his hands to get the rythym. All of a sudden he got the first part! We'll work on "there he kept her very well" another time. Smiler

He spent an hour and a half at the keyboard while I worked on and finished a year-end purge of a lady's records. I'm so happy because as you know, finding something to keep them busy is a real challenge. Next we're on to painting! Wink Best of luck, all.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: meeko11

Lurk-that is wonderful. Good for you both.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: JAB

quote:
Originally posted by b kelley:
I too am feeling helpless-my husband was recently diagnosed with alz. he is just 63.He too will not do anything to keep himself busy at home.At times he is too confused to do them but other times he just won,t try. i am at my wits end,i try to be understanding but I find i loose my temper why too much.Am I alone on this or do you find yourself getting angey sometimes too?

Hi, b kelley, welcome to the forum.

Sometimes it helps to understand why our loved ones behave the way they do. We really cannot expect them to keep themselves busy -- they don't have the initiative any more, aren't able to think and plan, do find multi-step tasks too confusing, and often suffer from apathy and/or depression.

Please do read those resources in my Jan 12 post on this thread. Also:

Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience":
http://alzheimers.boomja.com/A...xperience-59731.html

Jolene Brackey's book, "Creating Moments of Joy". It's great -- full of very practical, simple advice on how to make our loved ones feel loved, happy, and safe:
http://www.enhancedmoments.com/
Click on "Products" and scroll down.

The Savvy Caregiver training program from:
http://www.caresprogram.com
I think you can get a 20% discount with code AADVD20. Or you could ask to join the group of caregivers who are passing the training program DVDs around:
http://alzheimers.infopop.cc/e...14102241/m/506304424


If your husband isn't on an antidepressant, you may want to talk with his doctor about giving one a try.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: lurk

These message boards don't cost money, and after awhile you will feel better. Honest! And then you will slowly pick up on things you can do to improve your life and his life. I promise.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: Starling

I made myself do something nice for myself every day when my husband was living at home. Something nice could be as little as printing out the puzzles I enjoyed doing from the Internet, or making sure I had a book to read. If you can't figure out some way to do something for yourself you will not survive this caregiving thing.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: b kelley

quote:
Originally posted by CynthiaJ:
quote:
Originally posted by b kelley:
I too am feeling helpless-my husband was recently diagnosed with alz. he is just 63.He too will not do anything to keep himself busy at home.At times he is too confused to do them but other times he just won,t try. i am at my wits end,i try to be understanding but I find i loose my temper why too much.Am I alone on this or do you find yourself getting angey sometimes too?


I lose my patience and get angry some days. It really depends on what else I have going on. I keep telling myself I just need to get use to doing it all. It's hard to understand how someone can sit and do nothing but then I think its hard for women to do that when they are the ones use to taking care of a house and children and a job. We had been going to doctors for 2 years before we got the diagnosis. He is in what they say is the moderate stage. Lots of frustration. I do have a counselor I see on a regular basis to help me get through these times. She keeps telling me to do what is easiest for me. I think just doing it myself is easiest but when I read that it is important to stay active and do things, the 2 answers don't work. I appreciate all the responses and I don't feel as alone these days.

Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: b kelley

I too have a counselor that says "take time for yourself"in the middle of all this.How can you do anything for yourself?There is no time or money for me to focus on anything but my husband.Everything I do is centered around what he can or will do or what is best for him.He had a good day today,I pray for a good night. So nice to know I am not alone or a bad person for feeling angry at times.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: b kelley

Another dumb question--Where did my partener of 44 years go and how do I learn who this new person is? I miss the smiles and happy times with him and the grandkids.I guess this is just me feeling sorry for myself and not what this chat room is for.Forgive me I am stilll trying to come to terms with all the changes.
Anonymous
Posted: Tuesday, January 17, 2012 5:20 PM
Originally posted by: b kelley

I can probably find the time to do something for myself,but when I do I wind up feeling guilty for not devoting all my time to my husband.He does not like for me to read or even be on the computer,that is why I am usually on here so late. It is usually very hard at bedtime,he thinks he is ready for bed but then it may be hours before he is asleep.Then during the day I can hardly keep him awake.Is this a pattern with others?
 
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