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Old 03-27-2012, 01:23 PM   #1
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Question my sister

My older sister has Alzheimer's Disease, and she is getting worse by the day...She is still home(next door) and her husband is caring for her...she is only 67 and has had this illness for 3 years....My problem is that I am having a very difficult time facing all this..We were always very close, and my mother passed 1n1987 at 62...My sister took on the role of the matriach since...How can I reverse the role for me to be able to go over and care for her ( when she is stubborn, and she is very much so) when I can not even face she is sick I feel paralyzed...I love her so very much, and I'm confused as to why I just can't go and take care and help my brother-in-law???

 
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Old 03-27-2012, 01:53 PM   #2
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Re: my sister

Hi Dagma,

I am so sorry about your sister. I am sure you feel very bad that you cannot help her directly. However, since her husband is the main caregiver, you can offer part-time help to him so he can have a break. 24/7 caregiving is hard work and not one single person can do it. I don't know how sick she is now, but I am sure as she gets worse, she will need more help.
I don't know if your BIL refused your help or that you just wish to live there to help your sister, but I am sure you can ask your BIL to see if you can help your sister when he is busy doing other things like shopping and etc. Do they have kids? Usually adults kids may also help. It is teamwork as she gets sicker. She will need lots of help since she is confused.

You don't really have to learn to reverse the role - yes you do reverse the role but it takes lots of diplomatic ways to make your sister accept that she needs your help. She would always tell you she is right while she is confused and thinks illogically. We cannot say no to the patient when she demands something impossible, but we can gently explain to her the problem and help her out or distract her.

It would be nice if you and her husband/kids can work together to help your sister.

Take care,
Nina

Last edited by ninamarc; 03-27-2012 at 01:54 PM.

 
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Old 03-27-2012, 02:51 PM   #3
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Re: my sister

Dagma, I am so sorry your sister has this disease and you are having difficulty accepting the reality of the situation. It is difficult to wrap your mind around a disease that has no cure or treatment. Yet I do not want you to waste the time you have left with your sister. As devastating as this disease can be you can find moments of joy and there are new memories that can be made. You don't want to miss these.

What you need to do is leave the past in the past. Your sister took over as matriarch of the family out of necessity. She stepped up when your Mom passed away, not because she wanted that roll, but because somebody needed to fill that roll. She took her turn and now it is your turn. It is not a roll reversal. It is just you stepping up as she did. Take it slow. A visit at a time. Leave the past behind and don't worry about the future. Just stay in the moment with her and cherish each smile you receive.

The "stubbornness" is a result of the disease and you have to say that to yourself over and over and over. It is not intentional or directed at you but a result of her frustration with her inabilities. A good piece of advice that all care givers learn is... DO NOT ARGUE! If she tells you the moon is blue then smile and agree how beautiful the blue moon is. As long as it is not life threatening let it go. Divert her attention (easy enough because of the short attention span) to something different and then go back to trying to do what needs to be done. Many times being positive and leading her gently will get her to follow. Also if you are at ease with a smile on your face, she will be more at ease as well. There are many techniques you will learn along the way if you just take the plunge and go be with her. Perhaps you should go be with her while her husband is there at first to ease your way into caring for her.

As for being paralyzed by this disease.... please don't let the disease win. It is not what any of us wish for our loved ones. I used to ask "why" my Dad and then my Mom had this disease and amazingly it was my Dad that gave me the answer. He just looked at me and said... "Why not?". It is what it is and it is there to be dealt with. Letting it paralyze us or denying it's existence is not productive. I have said this many times before but we are what we think. If we think we are overwhelmed and paralyzed... then we are. A simple change in your thinking will go a long way. Rather than waking up and dreading going to see your sister, make a plan to go and then assure yourself that you CAN do this. Please do not focus on the disease but focus on your sister whom you obviously love dearly. Do it for her You can do anything for her.... and she has done for you in the past. Once you have been successful once, then you can do it again, and again.

Most importantly don't think of this time as "watching my sister die". That's a devastating thought. Think of this time as "helping my sister live as well as she can for as long as she can". Now there's a challenge with a positive spin. And that is what you want to do. You want to help her live. Fine something you and your sister can still do and enjoy each other and go for it. Amazingly you will find a new relationship with your sister that you will treasure. Being a care giver is a special bond that does have it's rewards. So just go for it....

Please keep typing. I do know how hard all of this is to do because I have been there and done it. It's all about how you think about it... so please be positive and hang around with us. We are here for encouragement any time you need it.

I might also suggest that you find a local Alzheimer's Support Group. It's a great way to learn tricks and tips for dealing with the disease and to connect with those that are dealing with just what you are dealing with.... and know we are here as well...

Love, deb

 
Old 03-27-2012, 04:24 PM   #4
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Re: my sister

i am so sorry to hear about your sister. this is such a hard disease to handle and react to. i think let things go naturally for the time being. eventually she will need even more care. i also think you are afraid and its ok. vent as much as u want. we are all here listening.

 
Old 03-28-2012, 10:10 AM   #5
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Re: my sister

Hey Dagmar So glad you found us! I am so very sorry that you are facing this with your sister. I recently lost my dear stepdad to this disease. I know I struggled with the same issue at first - "how am I going to now care for this person who always cared for me?"

I don't know if this will help you, but what I did for the years that he was ill was I always just approached him like things were normal. I was his daughter, he was my dad. I didn't make a big deal out of helping / assisting him and that seemed to make it easier for him. For whatever reason, he accepted help from me more easily than he did from my mom. I really think it had alot to do with how I approached him. Deb is absolutely right. They sense what we're feeling. As HARD as this is (and I know it's very, very difficult), if you can approach your sister with ease and love, and a smile, it will go a long, long way.

I'm with Deb. As strange as this might sound, the years my stepdad was ill was, in its own way, a special time. I spent as much time with him as I could. Now that I'm on the other side of having lost him, I wouldn't trade one single second of those hours upon hours where maybe all I did was sit with him. Nope - wouldn't trade one single second. Trust me - when they're gone you will wish like crazy that you could have one more minute, one more hug.

Your relationship with your sister will never be the same as it once was, but again echoing Deb's words, you will be surprised at the special moments/memories there are to be had even during this horrible, awful disease. Please vent / write anytime. There are many of us here who truly care. Take very good care and let us know how it's going.

 
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