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Old 04-20-2013, 05:41 PM   #1
Whyher
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Need advice

Hi! I am having a hard time with the whole process of my mom having Alzheimer's. Four years ago, (at 65) she went from watching my kids one week to being hospitalized 2 weeks later for pneumonia and beginning the first stages of Alzheimer's there. In the past 4-5 years, I went from talking with my mom for close to an hour every night to her barely being able to complete a thought. Less than a year ago, my brother moved her into his house because it didn't seem she could live by herself and my sister n law watched kids from home. It is now getting to where I think it is becoming a burden on them and their relationship and they want me to be more involved. I feel selfish, but it is hard for both my husband and I to work full time, raise 2 young kids and their activities, have time for ourselves and then also help more in my moms care. They want me to take her on the one day that we are not busy...Saturday night through Sunday. I feel selfish and guilty, because my mom lived her life for us. But I also have such a hard time knowing what to do when she is with me. I get frustrated missing the intelligent person I use to know. I also feel that it takes away from the time that i spend with my kids doing the fun activities that they are used to doing. I tried taking her roller skating with us, (just to watch), but she complained the whole time about wanting to go...so taking her with me on activities is not an option. Can someone please give me advice?

 
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Old 04-21-2013, 12:43 AM   #2
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Re: Need advice

Whyher.. nothing about this disease is easy. Nobody wants to be a caregiver. We all want our Mom, Dad, Spouse, or other loved ones to be as they always were. But this is not always the way it is. Sometimes we have to accept what life gives us to deal with. We have to step up and do what needs to be done.

You are extremely lucky to have a brother and sister in law that have been willing to take care of your Mom. Yes it is a burden on a relationship. Yes it is a a difficult undertaking especially when you don't have a day off. I can understand them wishing for a day off once a week. My recommendation to anybody who is keeping a loved one with dementia is to take off time each week to renew themselves. It is not too much to ask for a day off. It is just one day a week and this will not last forever.

The more time you spend with Mom the more you will understand how to deal with her behaviors. You have to give up the expectations of her being who she was and learn to meet her where she is now. If you can do this, you can still have quality time with your Mom. It will not be the same as before, but it can still be rewarding. You will learn that she has difficulties dealing with noisy and confusion. Many outings involve just that. Fun activities for you and the kids equals chaos for her. If she accompanies you, she is going to complain. But that should not mean that you can not give your brother and his wife a day of peace, when you have six other days in the week

If you just can't keep Mom a night a week, then perhaps you can pay for a care giver to stay with Mom during that time. What is the possibility of Mom going to a care facility? It sounds like it may need to be considered. If this is a possibility you might want to start looking into facilities in your area and decide which one would fit your needs.

You can also suggest to your brother an adult day care. This way they would not have Mom at home during the day several days a week. Some care facilities have respite care if they should want to go out of town. There are lots of possibilities that can be researched.

What I do know is that nobody needs to have the total responsibility for a loved one with dementia 24/7/365! It is just too much to ask one person to do... or even a couple. This is not something that is going to go away in a few months, or even a year. This is a long term commitment. My Dad was diagnosed with Vascular Dementia in 1998 and died in 2010. My Mom was diagnosed in 2006 and died in 2012. We kept them at home, in Assisted Living, and finally in a locked dementia unit... over a span of 14 years.

I also suggest that you spend time with your Mom. Read all that you can about this disease. The more you learn the more comfortable you will be. Find a local support group where you can contact with others. Knowledge is power and gives you the information you need to turn this into a rewarding experience. I never ask for either of my parents to have dementia. I raged against it for a while. But in time I understood that it was not the end of the world. I could make it a horrible experience or I could make it a good experience. I actually had a choice by the way I reacted to the situation. I chose to enjoy my parents as long I could. "Coping with Alzheimer's: A Caregiver's Emotional Survival Guide" by Rose Olive, "Creating Moments of Joy" by Jolene Brackey, and "Learning to Speak Alzheimer's" by Joanne Koeing Coste, are all great books to start with. If you have any specific question I will be glad to help you as well

Love, deb

 
Old 04-21-2013, 02:17 PM   #3
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Re: Need advice

I understand that siblings want to rotate Mom's care. Does this mean that you move Mom to your house every weekend? I don't think it works this way. A demented person cannot be moved many times. For now she may know it is your house or his house, but later on she will be confused with the location. After all, it is not about the custody of kids for divorce!! Kids moving around 2 houses are bad enough. Mom is too old and too demented to be moved like this.
The best thing is maybe you can go there to help out. Hire a part-time caregiver to help Mom. You can share expenses. Mom needs to stay in one place to keep her old memory intact for quality of life.
An AL or memory unit is one option too if Mom can accept this move. If she is in early stage, she may not want to move to another strange facility. Don't ask Mom if she wants to go to an AL. If you have to, tell her she is moving to a better place for more social activities with peers.

Hugs,
Nina

 
Old 04-23-2013, 09:22 AM   #4
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Re: Need advice

My reply probably won't make you happy but I think you need to step up and help your brother and sister in law out. After all they have her 24 X 7 it seems and are only asking for you to take over for 1 day a week. They give up their family time every day and it doesn't matter if your sister in law works out of the house or not that just gives her more time to take care of your mom.
If nothing else maybe you can bring her to your home and set up a visiting nurse to take care of her. You want to teach your children how you would want to be treated in the same situation and that might be the best thing you can do for her and them. In any case your brother's family needs a break.

 
Old 04-23-2013, 09:37 AM   #5
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Re: Need advice

It is also possible that you move Mom to your home and hire a part-time caregiver to work with you to take care of Mom. You can buy books like Deb suggested to learn how to understand Mom and deal with Mom. It is important to validate her thoughts and don't argue with her. Validating doesn't mean agreeing but it is just to go along with her to respect her feelings. You can correct some things behind her back. e.g., she may say she has not eaten yet but she just ate. Agree with her and if she insists on eating, give her some snack or fruit.

In general it is the women who can do better care than men. Naturally it is your SIL that takes care of Mom, not your brother. He works and she stays at home so naturally SIL does all the work. It is not fair since she is NOT her daughter. It should be the son or daughter that takes care of Mom.
SIL has kids too like you. It is not fair to put it on her just because she is a housewife. Her kids and family need a break for fun just like you do. If SIL knows how to deal with Mom, learn from her so you can talk to Mom and help Mom.

Whatever method you choose, you should be a partner with your brother in this matter. Share the work to help Mom.

Hugs,
Nina

Last edited by ninamarc; 04-23-2013 at 09:38 AM.

 
Old 04-23-2013, 11:46 AM   #6
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Re: Need advice

Thanks everyone for your advice. I forgot to mention that all of this comes at a time when I am also taking 2 college courses along with my full time job as a teacher. Just to give an idea of this week: (Also, including work from 7-4 each day.) Daughter's softball game Monday night, son's t-ball game Tuesday night, daughter's practice Wednesday night, daughter's school performance Thursday night. College class Friday from after work to 9 and Saturday from 8-6. This is why it became so hard to "help out". They....my SIL... want me take my mom Saturday night and all day Sunday. I don't know how to manage that. At some point, I also need a break and I need quality time with just my kids and my husband. Another factor is that my husband isn't very supportive in taking care of my mom. Therefore, having her live with us is not an option. Helping out is...but I don't know how at this time, but my brother and SIL don't seem to understand. I did take her this past weekend when I got out early Saturday from class for Saturday at 1 and brought her home around 1 on Sunday. The comment I got was...what you can only take her for 24 hours? I went home and had to study and do homework for my classes and attempt some housework.
As for the advice of taking care of her for my kids to see....I have already told my husband and will tell my kids as they get older...to take me to a nursing home at the point in life that I can no longer manage for myself. I know I may not want it when that time comes, but I would never want to make their life harder. I feel that most people don't have to go through their parents and alzheimers when their kids are young. Usually, I feel, that it is when children are older and more able to do things on their own. With young children, it makes it very hard to share the time.
I'm not trying to make excuses and maybe I just need to write to vent and help myself figure things out. I think everyone is different in the way they deal with what life gives them. I love my mom very much. I miss our daily hour talks on the phone and our big Saturday shopping trips (now she gets too out of breath to still do them.) I want what is best for her, but I also want what is best for my family.
The nursing home has been mentioned, but my brother doesn't feel it is time since she still recognizes us, but yet he is gone all day and tends to work outside of his house or at his other house when he could be home helping. I agree that the nursing home would be hard at this point. I have also mentioned adult daycare and hiring someone to come watch her at the other house 2 or 3 days a week and I don't get much response to that.
I will help when I can, but not at the expense of my marriage or my kids happiness. They do like to see her and I want that to continue, but we just need some happy medium.

 
Old 04-23-2013, 12:22 PM   #7
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Re: Need advice

I am amazed that your brother thinks no outside help is needed???
What does he think his wife is? A robot? She needs a break too. One day a week from you is not enough! Either you or he needs to hire some part-time caregiver to help out.
Doesn't SIL have anything to say? Is she forced to do all the work by her husband?
He probably doesn't realize how much work it is to handle Mom. My husband was never aware of the stages of Alzheimer's when we cared for his late Dad. We hired caregivers. In severe stage, my late FIL went to the memory unit in the last 2 years.

It sounds like your brother doesn't understand what it takes to take care of Mom. It is a lot of work and stress because Mom doesn't think right and will give SIL lots of hard time.

Please feel free to vent. We are not to judge you. Just give you the options.

Assisted living is not a nursing home. Memory unit is AL for memory loss/dementia.
Skilled-cared nursing home is for very sick patients only.

Hugs,
Nina

Last edited by ninamarc; 04-23-2013 at 12:25 PM.

 
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