Hi everyone,
I have been lurking here for many months and have received comfort in the many posts I have read. I just feel the need to vent a little.
My husband and I took his Mom into our home almost 11 months ago. She has dementia and also colon and esophagael cancer.
She has a much younger sister and niece who she was extremely close to. However since her illness was noticeable for the past 2 years (her dementia not the cancer) we have seen a lack of concern from them. It seems to me that she was loved and appreciated when she was able to do things with them but now is a different story.
Her sister lives in the next town about 15-20 minutes away. Sister has come a total of about 10 times since June last year and 3 of those times were this past week when her daughter came from South Carolina to visit. 2 weeks, 4 weeks , 6 weeks and onetime 8 weeks went by without a visit. Hurricane evacuations came and she never once offered to take Mom. Instead she had to be evacuated to a nursing home with us left to fend for ourselves (Sister lives in a 3 bedroom shuttered home out of the mandatory evacuation route).

We get to clean the dirty underwear and watch her slowly die but now we don't stimulate her like the niece when she visited. Easy for them to say Mom tries to put a happy face on for company but we hear the moans and groans and lost sleep at night.
Plus Mom makes it clear to everybody that she would rather have had a daughter than a son! Not only now but that goes back 25 years ago and she said it in front of me.
I feel like we are the enemy even though we have given up sooo much to have Mom live with us. She sleeps in what was our dining area and we now eat all our meals on a small "ice cream type table" in the kitchen. She even complained to them that we eat late at nite (we do) and talk while she is trying to sleep! What are we supposed to do? Go to bed at 9PM? I almost feel like she would like to have us appear and disappear at her whim. We live in a 2 story 2b/2b townhouse and she can't stay upstairs because she can't climb them and would be isolated even if she could. One day the sister was here while we went out to lunch and when we came home she had a new will written for Mom and had her sign it!!!!! I call it "War and Peace " jokingly because Mom can't remember if she ate lunch or make decisions on what she wants for dinner but the sister was able to get her to write a new will. Of course I know it is not legal. The sister was worried that the old will which was crossed out and had other names put in it would have been invalid! As it is she split the will 3 ways, her sister her niece and her son.
Her sister's husband will not come to visit because they hate each other.
I am so sorry it seems as all I have done is rant and rave.
I do love my MIL but she is not an easy person to get along with. One time she came to visit my husband and me and cleaned one floor tile and one handle on the dish closet to see how dirty they were. I never was able to get the other tiles to look as good! LOL!!!

Thank You all I feel a little better!
Carol :wave:

Dear Carol,

Welcome to the 'enemy club'. Why are we, the care GIVERS, not recognized? Why are we maligned by other relatives, who try to get on the 'good side ' of the dementia patient by lies and manipulations, and sweet talk, while WE are left to do the literal dirty work?

Is it some kind of natural law or human behavior law, that those who do the most are resented the most.

See my previous emails regarding my sister!

She sees herself as the good daughter, and I am the one who exaggerates Mom's condition and tries to make everything sound far worse than it really is ..etc etc

Is it money, (alone?) Do they think the affected person will leave them more money because they were so wondefully understood and loved and cared for on their few short visits? Do they need recognition for 'all they did ' - which is nothing at all compared to all that the real caregivers do?

I have no idea. But this syndrome has cropped up so often on this Board that i figure it has to be expected. Maybe to stop them from suffering the pangs of guilt?

Or is that an unknown emotion for them??
No idea. Welcome to the club!

My personal opinion is that there will be rewards for all this, a feeling of having done our best ... the recognition of those who really know what's going on, and maybe more, some heavenly reward ..although no one would sign up for this job just for 'pie in the sky' some day!!

Love,

Martha

Thanks Martha for the response.

It sure has been a Merry-go-round ride. Hard to understand the lack of concern on MIL's sister. But they can sure criticize. She flits in for about 30-60 minutes when the mood stirkes her. Hard to believe this is a loving sibling.

Thanks and God be with you :angel:

Love,
Carol

I also understand the merry-go-round ride. My FIL had for years discounted my husband (his son) and actually said that the step-son was his "best son". My husband has done everything for his father over the years when he was well. The step-sister was the same thing. She threatened us with a lawsuit over power of attorney because we wanted FIL to move into a Retirement home. (He refused to live with us) Now that my FIL is in stage 5/6, the step-sister (who lives in the same city) has not seen FIL for 2 years, and the brother comes once or twice a year.

My husband is now the only one his dad knows. He is the only one who can calm him or help him with anything. My husband has the best attitude in the world about this and has proved over and over to me why I married him.

Its so difficult to deal with the "enemy" mentality stage, we went through it. It took years but now we are past that stage and while his progression into the abyss that is Alzheimers is sad, Dad now shows his son every day that he loves him.
Keep your spirits up and remember that even though there are times when you feel trampled on, It takes a special person to do what your doing.
Take Care and God Bless

They're angry because they have to rely on us to do what they cannot do for themselves. They resent us for that but at the same time, I have to believe that there's some sort of appreciation there. My dad just may not have the right words to express it. We all know when the person with dementia angry by the tone of their voice. But we can't always tell when they want to thank us or say they love us by their tone. So I just have to believe it.

They may be jealous of us because we can still do the things they can no longer do.

They're angry because they know what they're trying to say but it's not coming out the way it should.

They're angry with you because you can do what they used to be able to do.

They're angry with themselves because you HAVE to do what they used to be able to do.

Do you know how it feels when you go visit a relative? You stay at their house. It's nice to visit but it's nice to get back home. These people can never go back home, even when they ARE home. They'll never be home.

They're angry at the disease, you, themselves and life. They're bitter because of all the things that have lead them to having to depend on you. They're lonely even in a room full of people. Why? Because dementia eventually leaves room for only one. They're frustrated because no matter how hard they try, they can't remember how, who, when, where or why.

See you, the caregiver, reminds them of all the things that are happening to them NOW.

Seeing people they rarely see reminds them of things before the Imposter came to rob them of their lives.

I think this is at least partially the reason people seem so much better to others who don't live with the cruelties of this disease that we, the caretakers, do.

I believe people with demetia know more than we think they do. I think they have more trouble articulating, responding and reasoning. I believe a lot of times, it's in their heads. They just can't find a way to get it out.

Love, Barb

Barb, and Everyone:

I don't know what I would do if I didn't believe that Mom ,your Dad, and all the others will be WHOLE again someday, somewhere. They will be in that better place where there will be no pain, no dim eyes, no confusion, and no dementia ... I firmly believe this. I would never be so crass as to say this applies only to a particular religion. We are all children of God. Barbara's Mom is already there, and our loved ones will be there soon .. where we will meet them again. I hope that at the latest, they will be able to tell us then that they are grateful for our help ...

Love,

Martha

Yes, today is better, Esther is back.