Wednesday, November 2, 2011

When Your Home is Not Your Own

Lately, Courtney and I have been struggling with the issues of other family members and their ability/inability to help us (Brandon is away at school and hasn't been affected by the recent craziness)
Way back when, after Mike and I gave birth to Courtney, my mom offered to take care of her when I went back to work. This worked out very well. Soon Courtney reached her one year birthday, and Mike and I began trying for a second child. We wanted to have our children close in age so the chances of them getting along better and becoming good friends would increase. The style of music, clothes, books, movies etc would all be the same. I gave birth to Brandon 20 months after Courtney was born, and my mom realized that it would be very difficult for her to take care of both children by herself. She asked if I could hire a mother's helper a few hours a day. I gladly agreed. Searching for a mother's helper who would work well with my mom was impossible. My mom felt they didn't work hard enough, didn't listen to her (she was, after all, the boss when I wasn't here), or they just plainly didn't care enough for Courtney and Brandon. After a few hires and fires, my mom decided that no one could help the way she wanted so she wound up caring for Courtney and Brandon by herself. When they started school full time, she still came by our house every day [our grandmother had ived with us as we were growing up. We knew her well, she wasn't someone we saw only on holidays. Grandma living with us was normal, so when my mom came to our home every day to be with the kids, I felt that it was a GOOD thing].
Then Mike was diagnosed with Alzheimer's. The kids were only 7 & 9 and I still had to work full time, especially since Mike was no longer able to work. My mom continued to come by every day. She did the wash for us, she made the kids lunches, picked them up from school when they were sick, kept track of their Dr.'s appts etc. She was a BIG help for me while I was trying to take care of Mike, the kids and run a house. Then Mike got bad enough and we needed to get an aide for him.
My mom had issues with every aide we had. They weren't doing their job, they didn't take care of Mike, they were always late, the food they brought for lunch smelled...and so on and so on (In fact my brother JUST complained tonight that the substitute aide that came today parked his car in my brother's spot on the street and told me that I had to tell him NOT to park there in the future!).
Courtney, Brandon and I have had to deal with family members and strangers in our home for the entire 10 years we have been caring for Mike.
Our home has never really been OUR HOME.
After 10 years, it's REALLY beginning to get to us. My mother has a difficult time getting around. She still comes to our house every day (yes, with BOTH kids in college now) to "help" but what she doesn't realize is that now I find that I'm taking care of her also. She has a difficult time getting into our house, so we have to get up early to help her into our house EVERYDAY. She brings her own laundry, which she can't carry anymore, so we have to run to her car to carry it in. She walks so slow, it's difficult just getting around her in the kitchen each morning so I can prepare Mike's meals and medicine. When we suggest that maybe they should not come over as frequently, she gets insulted. Her husband can barely walk due to spinal stenosis, yet she still makes him drive here everyday.
I try not to get too aggravated, because I KNOW there will be a day when she won't be around and I will miss her terribly. I love my mom dearly and I appreciate all she has done for Mike and I and the kids through the years, but she never seems to understand our frustration when she acts like our house is hers.
Let's not forget that my brother still lives with us and he has some major health issues. He recently found out he will probably need double knee replacement surgery, so any help we got from him in the past will be gone. He will be yet another family member sharing our home.
I'm sure there are some of you out there saying, "what is she crazy, I WISH I had family around to help". Like I said, don't get me wrong, I love them and appreciate all they have done, but some times it would be nice to be "just us".
Living with a loved one with Alzheimer's Disease is horrific, living with a loved one with Alzheimer's Disease in a home where there is no privacy makes it even worse.


Sheryl said...

Karen, I can totally see how you would like for it to be just your husband and children. You have so much responsibility already careing for him and still "raising" your children. Even though they are grown. Then having to care for your mom, and brother. WOW! I know you want to, but everyone needs some "time of their own" sometimes. I read your blog and all I want to do is jump in the car and come help you, hug you, and I can't. I wish there was something I could do. You are a very good person and it is not going unnoticed I'm sure with the people around you. It certainly isn't with people states away. I pray things will go easier for you and you all will find some sort of peacfulness along this journey you are on. "Big Hug"
Thanks for sharing your stories.

CĂ©leste said...

Dear Karen,

I don't really know how to reach you but to post a comment on your amazing blog.

I have read your story, and all I can say is that I am deeply moved and impressed by what you are doing.

I am a graduate student at Columbia Journalism School and if I write to you today it is because I am planning on doing my Master's Project on people diagnosed with Young-onset Alzheimer's disease.
Although a lot has been written on Alzheimer's, I feel very little is known about YOAD (most of my friends were very surprised when I told them that you could be diagnosed with Alzheimer's even when you are 40 years old).

I realize you must be extremely busy, but I would really appreciate if you could take a little bit of your time to speak to me about what you and your family have been going through, so I can better understand the many implications of YOAD.

Thank you very much, and thank you for sharing your hard but amazing life.



Karen said...

I actually e-mailed you last night. MaryAnn at the Alz. Assoc. had given me your e-mail. It would be my pleasure to help you.

Carl in NC said...

I understand your feelings. I understand the desire for things to be just normal family living for just a while. It is not easy having new caregivers come in and having to adjust to all the different perspectives on how to run a home and/or care for disabled spouse and children. It is a mixed blessing for sure as these people do provide so much support and encouragment too and it would be impossible without them. As Sheryl said, I too wish there were ways to be able to help one another more and to relieve the stress without creating potential additional stresses. I am praying for you and your family and other families who are going through the same issues.

Take care and God bless,