Hi Ladies,

Don't forsee this happening right away but I do see where my mom or dad or both may be living with Roy and me in the next couple of years. My relationship with them is fair and I love them very much but I'm uneasy about them staying with us--they are somewhat demanding and critical.

Any suggestions that might make living with them easier?

Really appreciate you input; for this is an area where I need help!

Hi, Toni. Have you read the Boundaries series by Drs. Cloud and Townsend? They are really great at helping the reader see where their responsibility ends with demanding people. Guilt is a big weapon. The books have been a tremendous help to me.

Donna

Donna,

Have not read the "Boundaries" series but sounds like just what I need! Thank you so much! Will check this out at my local bookstore.

I envy you and have asked my mom (84) to come stay with me. She too can be and is demanding and feisty too but I would adore having her here. I would just let them hang out and go about your business as you would normally. Just because they are there doesn't mean you have to entertain them or that they want to be entertained BUT it could be such a warm, loving experience and although testy at times it could be so wonderful. Bless you for thinking of them and being a good loving daughter. God will help.

Thank you so much, Chatty. I think I needed to read those words. They can be difficult but I do like being with them and I've always wanted the best for them.

I'll see what the good Lord has in store. I feel that it will happen in a couple of years--their health is not good and they're lonely.

Sometimes a word in season, is so wonderful!

God Bless...

We need to get Thistle in this forum when she returns from Russia. I bet she could help.

A friend just told me yesterday that her dad may be coming to live iwth her. He has cancer and alzheimers.

We're getting the pb and j squeezed right out of us in the sandwich generation.

That is for sure! Cancer and Alzheimer's! How terrible for anyone!

I have a terrible feeling my mom could be in the beginning stages of Alzheimer's...she has many of the symptoms...

If that's the case, I've got to do some researching reading so I can help her...What a terrible disease!

Toni,
Several of us have been through this with the dementia and alzheimers and will be here to help you. I think the 24 hour day is a great book. The Notebook was good too.
I kept a journal throughout mothers illness and I think it helped me more than her.
Maggie

Wonderful ideas, Maggie--especially the one about keeping a journal. Writing down thoughts help so much and help keep treasured memories alive.

It's also a wonderful way to remember precious days..

Thank you..

Toni,
One of our favorite tapes was Folks with Tom Selleck. We were going through it all and this was so funny and right on target for us at the time. I remember laughing so hard I cried. Course I've always liked Tom Selleck too.
Maggie

and with Tom Selleck, what's not to like? OMG...I adore that man.

Girl, start your journal TODAY on your Mom even if she doesn't have it. It's a win-win situation. Journals are fun to read later, but more importantly, if she DOES have any kind of dementia, record keeping becomes invaluable. You truly believe you will remember every detail but you will not! trust me. We kept a daily journal on Daddy and my only regret is that I wish we had started it at the very, very, first signs of anything amiss. Use our experience as a learning tool. Follow our lead. Because when it comes to AZ or any other kind of dementia, everyone is different, responds differently and there are no set patterns. So, knowledge beforehand is crucial to the well being and quality of life for your love one.

You don't even want to get me started on this subject. I never know when to shut up.

JJ

There is a new drug out for Alzheimers that has been around in other countries but has only recently been okayed here in the states. I can not remember what it is, but I think it came from Australia...don't quote me on that. When I heard how good it was I cried because my mom was already gone and it hurt to think there may have been something that could have helped her but was too little too late, sigh.
I have had both my mom and my mother-in-law stay with me. At one point they were both here...that was interesting. My mother couldn't remember who my mom-in-law (whose name is Margie) was and kept calling her "Louise" and wanted to know why Louise was at my house. I had to make sure I did things "even Steven" because they watched me like a hawk to make sure I didn't play favorites...it was pretty funny. One night my mother (who had gone to bed...I couldn't go to bed until I knew she was sound asleep what with her Alzheimers and all) peaked her cute little bright eyed face around the door of my office and I said, "Hi Mom" and thought she had gone back to bed. Then I realized my mother-in-law was snoring an awful lot louder. I jumped up and there was my mother leaning over my mother-in-law looking in her sleeping face. I grabbed Mom and pulled her out of the room and Mom was saying "What is Louise doing in that bed." Needless to say my mother-in-law started locking her door at night!!!! One day I had a friend come over and we were sitting on the sofa talking and laughing and my moms were sitting in chairs across from us watching us like we were television. It was the wierdest and funniest thing. I guess we were good entertainment.

One thing to make sure you of is that you get time away for yourself and that you take good care of yourself, especially with Alzheimers patients. You get so sleep deprived and worn down. I beat myself up for a while because I didn't do things as well as I felt I should have, and then I read some booklets on caregiving and realized I was just normal and not horrible. (I lost my temper with my mom about three times and yelled at her...massive sleep deprivation) At that point I realized I had to start hiring people to take her places so I could have a break in my own home and also have them watch her here so that I could get away. Merwyn worked a distance away and would be gone for four days at a time if he didn't do overtime. It got so he couldn't do overtime because I would slide down that slippery slope to depression. I needed him so desperately during that time. My mother behaved so much better when Merwyn was home because he could be more upbeat than I could and joke with her and tease her. I couldn't. I had lost my mom and couldn't communicate with her like we always had and she wasn't always sure who I was (sometimes I was her mom and sometimes I was her sister, Doris). Boy, I have just gone on and on. I better stop now.

If your parents are in good enough health and you can afford to do it, you could add onto your house and do a granny flat. We were going to do that for my mother-in-law but she had a stroke and had to be placed in a nursing home.

We have friends who did an addition. They didn't do a bonafide granny flat because here in Winters if you put a stove in it adds $13,000.00 to the permit. So, they did a living area with a wet bar/microwave, a bedroom and a bath so that their parents could have some privacy and get away on their own.

What a hear-warming story and a heart breaker, too! It is my prayer that should mom become this disoriented, that I have the skills and strength to take care of her. She has always been a woman who has taken care of others and is hesitant on taking help from others.

Over the last couple of years I have seen a difference in her--unable to remember, forgetful...She tries to hide it but the symptoms are there.

I will keep in mind what you said about taking time for myself; for I have a strong tendency to handle all problems by myself. I am; however, blest with a husband who watches over me like a hawk to make sure I don't overdo. He will be of great comfort, I'm sure.

Again, thank you so much for the info and I stand amazed at what you went through! Thank you so much for sharing your story; you showed that even with something as serious as Alzheimer's, there is humor and grace, too.

Thank you so much, Toni.

It has actually been the most difficult two years of my life, but not just because of my mother's illness and death.

If you and your siblings grew up in a dysfunctional home (we took the fun out of dysfunctional), an ill parent brings out the worst in all of you. I have 3 living brothers who are not good at dealing with their emotions and it turned ugly, especially since I was chosen by mom to be the executor of her estate. I was accused by one sibling of stealing $6000 and then $10,000 and now it is up to $17,000. Shoot by the time he is finished I will be a millionaire! I learned a lesson for myself and what to prepare MY children for and how not to handle my assets!!

If you can catch your mom early enough you can slow the process of AD. My mother had alzheimers for several years before we did anything about it. She lived some distance away and so we weren't too aware of it. She would hide it from us. They hide it because they don't understand what is happening to them. I can remember Mom telling me "something is wrong with my head". But, this was after she came to stay with us. I am sure all of those who have gone through the experience of having a parent with dementia have plenty of stories to tell and advise/warnings to give.

Oh one more thing. My mother could not tolerate the medications designed to slow the advance of AD. When she first came to stay with me she would not eat, get dressed, get out of bed or anything. She just curled up into a little ball and wouldn't move. I thought she was dying and was terrified. Turns out the medication was making her stomach hurt. Once I figured out what it was I took her off the meds and she had a marked improvement. When an elderly parent takes meds, it is important to keep a close eye on how the meds affect them, especially those with dementia. Although sleeping pills will help them to sleep, they can also cause problems for AD patients so you have to be careful. Any drastic changes in a parent's behavior? Check to see if they have started any new meds.

if you want to read more about the new drug, you can go here:

http://www.alzca.org/

JJ

Wow Lala, JJ and others the stories are so similar and yet so different.
One of the agencies here who has wonderful caregivers is Faith in Action. Most of them have been through similar circumstances and are there for you. The training is like Hospice. In fact our Volunteer Hospice coodinator here began the Faith in Action program and is now there volunteer coordinator. They do have Faith in Action programs all over the US. I am sure there are other programs out there too.
Maggie

Maggie,

Thank you for the ino on Faith in Action programs. Will check the web to see where they are located....

Wow!!

Thank you, Maggie, JJ, Lapaloosa, everyone! What great and helpful information. I no longer feel alone!

What comfort and joy the ladies of this site are!
God Bless you all....

The Journal idea is wonderful--what a great way to record how mom is doing....

When that time comes and it most likely will, I will be ready...Many thanks.....

Toni, whenever anyone comes for a prolonged visit in our homes we need to set boundaries from the get-go.

You and your husband may want to consider what those boundaries may be.

An example would be that she may only make doctor appts. on certain days, or that you would make them for her if they will invovle you and your husband transporting her. Lots to think about...

Dotsie,

Good points about having 'boundaries.' I know that when I was a child, boundaries were set for me and that made me feel safe and loved.

I don't see too many problems because they know we're organized and caring people. My husband, Roy, also is supportive and caring of me and my folks. That will be a great help....

Thank you for the word, boundaries. Very helpful and timely....

I had to jump in here. The boundaries books, are the best ever. When we used boundaries for kids, our house became a much better place. I had to get the boundaries for adults. I suggest the boundaries book for anyone who has family issues.

I only wish I had read the book, when I was 10. Life would have been so much better.

My children have much healthier relationships with their friends. And when my son brought home a psycho girlfriend, we made him read the book, and he broke up with her. He is still amazed at how she is trying to cross those boundaries, two months after they have broken up. A good object lesson, I would say.

Use boundaries all of the time with my mother in law. Father in law has Alz. Mother in law knows no boundaries and never has! Some days I dont' know which is worse.

Dutchy, please tell us the names of those books on boundaries. I can't wait to research them. Thanks.

Dutchy, yes, please...I need to find a good book for adult boundaries.

I planned for years that my mom & grandmother would end up living with us.

The only thing I didn't plan....was when it actually happened!!! I am still learning as we go!

For me it's been easier having them here. I don't have to worry about them being alone. I don't have to deal with my job/missing work/traveling back & forth (even if it was only 10 miles!)...so in that aspect, things are easier.

But emotionally & mentally......it's a work in progress!!!

Research all you can. There have been so many more things come about that I never imagined!

And we're all here for you!!!

The books that I have been talking about are

"Boudaries" By Townsend and Cloud
"Boudaries for Kids" By Townsend and Cloud

Great books!

Here is a link to an Ask Dutchy post I did where I actually used a quote from one of the books.
Ask Dutchy, practical ideas and support for helping the elderly with Alzheimer's Disease http://askdutchy.mycarelink.net/2005/06/mom-has-alzheimersdifficulties-with.html

These books are extremely helpful on all sorts of levels. I guess what I am trying to say is that the guidance these books give can be applied to a wide range of situations.
My Care Link Helpful Books and Resources http://mycarelink.net/resource_material.php

Dutchy, thanks for the titles. I'm going to check them out on Amazon.

I don't have a problem setting boundaries for my children, but I do with other adults.

[ September 03, 2005, 10:09 AM: Message edited by: Dotsie ]

Dutchy,
Don't you think denial is the first thing that happens? I know it did with us.

We used "old age" or "tired" and other things to dismiss what was going on with Daddy. He had an operation for corroded arties (probably misspelled) and had mini-strokes we were told (on the operating table) yet we even denied those. We pretended that the anesthesia they gave him was the cause of his mind wandering, forgetfulness, and hallucinations. And it worked, but after a few months, you have to wake up and admit there is something else going on, especially after he tells you that he's enjoyed the visit, but now he needs to go home to his REAL family.

JJ

[QUOTE]Originally posted by jawjaw:
Don't you think denial is the first thing that happens? I know it did with us.


Yes, I do believe that denial is the first step of this process.

12 steps of accepting Alzheimer's/Dementia (adapted from "life accoring to how my mother in law views it!)

12. Denial
11. More Denial
10. Call it something its not
9. Cover up any mistakes
8. Discuss this with your relatives
7. More Denial
6. Help the person out by doing more things for
them-(note to MIL- denial is OK)
5. Give them a notebook
4. Cut their food into smaller pieces
3. Keep telling yourself there is nothing wrong
2. Clean up after their messes (exteme denial)
1. Place them in a long-term care facility (note-some denial might still be present at this stage.)

jj, your family had healthy denial. My mother in laws denial is unbelievable. All of my in laws friends have approached us and have asked/told us, "We've noticed Neal is having a lot of problems, have you guys noticed anything?" DUH! They have all been so nice!

I can't wait until one of them asks us..."your mother in law is in denial, have you noticed this?"

I know once we accepted (we being me and my four sisters) that Daddy had an irreversible dementia, we learned very quickly to adopt a new mind set. We switched out thinking from "oh he'll snap out of it" to "okay, lets read every single thing we can get our hands on and learn to cope."

Mother continue to stay in a somewhat stage of denial, however, to her benefit, it was the only way she could continue to cope with Daddy's loss of memory, her breast cancer, and her partner of 57 years living in a home. She eventually realized the disease was "what it was."

We all vowed to give Daddy the best possible care and quality of life we could for whatever time remained. We did. I have no regrets. That is, other than turning my back on the disease and the VA facility once Daddy died. I really need to be active again with the vets that are still there.

And now to my question: Have you heard of other people feeling/wanting to cut off anything that had to do with the dementia after their loved one passes away? VA Homes, Nursing homes, people, nurses, the doctors, etc?

JJ

Yes and I was one of them. After my sister passed away it was as if I was in shock or something, I took care of her 24/7 for 5 years she had MS which caused severe Dementa. A time after she died I left my home, drove up to Flagstaff Arizona rented a nice room in a hotel and just slept for days, cried and slept somemore. Finally after about a week of that, I could feel the stress leaving my body. I went to the pool to get some sun, it was June 1st when she died on her 50th birthday. I then began to talk with people and actually laugh out loud. I spent 2 weeks there and headed home. My son had had the entire house cleaned by Merry Maids while I was gone and the room had all new bedding etc. It was as if she were never here phyically and yet her spirit is here even now. JJ I think it took about 6 months before I felt back to normal whatever that was. It is a hard road to travel and leaves a mark that never really leaves us.

[ September 05, 2005, 08:40 PM: Message edited by: chatty lady ]

Yes, I too am one of them who still can't go back. I need to just to see the staff and any of the residents that you become so close to.
Yet is is the last reminder of my mom and its hard to get the courage to go back. I don't remember reading anything about this though.
Maggie