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Old 05-05-2009, 06:28 AM   #1
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Feeling real guilty

I am feeling so guilty today, I do not know what came over me Monday evening. My Sister brought my Mom w/Alz to my Grandson's baseball game. This is the first time she has come, she sat on the bleachers and then when it was time for her to get off the bleachers to leave, my Mother did not know how to get off of the bleachers, and there were other people sitting on the bleachers, she would not listen when I gave her directions on how to get up and out of the bleachers, so she chose to sit on a lower bleacher and slide herself out of the bleachers, almost knocking a person over so she could scoot herself off. She looked like my two year old Grandson, asking for help, and if it was him I would of ran over and picked him up, without a thought. But with my Mother I did not do that, I walked away and let my Sister deal with getting her out of the bleachers by herself.

I was a bag of emotions, I am feeling guilty, because when it happened I wanted to just cry, but I did not I walked away. I have this feeling deep inside that I was embarrassed and just wanted to scream, she has ALZ alright.

I want my Mom to enjoy her Great Grandsons while she can, but I am always scared to take her out in public I never know what she will do. I took her shopping the other day and it was like having a two year old child with me. I would turn around and she would be gone, and then I would go looking for her and in a matter of seconds, she had gotten at least four aisles away from me and was starting to freak out because she could not find me. Thank the good Lord I found her.

My Mom has never embarrassed me and I am feeling like I let her and my Sister down. I apologized to my Sister and she was so kind to me about the whole situation.

I am so scared as to where my Mom is headed and I do not know if I can handle her, not being who she has always been.

The changes have definely been significant in the last few months and I just want to run away and not deal with this, but out of four children I am the my Mother's POA and my one Sister helps a little and the other two have already ran away, and are not dealing with Mother.

I thank God for this board and allowing me to talk to people who might have felt the same way. Please I am looking to relieve the guilt inside of me.

Thanks,
Julie

 
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Old 05-05-2009, 07:48 AM   #2
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Re: Feeling real guilty

CAJ

first off, we all here want to send you our crying towels -- we'll hold one corner and you get the rest. Wrap yourself in our love.

Please cut yourself some slack. I wasn't that hands-on with Mom, not because I was embarassed but because I couldn't go the length my sister had to with supositories, creams, etc. I just couldn't do it.
It was also that the other stuff I could do, my sister made me feel like no one could do it better than her but it was due to her lack of planning. She'd run out without telling us if Mom ate or needed to, drank or needed to, etc. Then she'd get mad that we just sat and watched TV. I mean, even if she needed to eat, I didn't know what to give her since she had such a restrictive diet and anything that she ate could give sister more problems later.

Send your Sister a bouquet of flowers for no reason -- just because . . .
she knows that your mother reacts better for her than you so she didn't take offense that you couldn't get your mother to do what she needed to do.

Next time you take your mother anywhere -- put her in a wheelchair OR
get one of those children aparatus that keeps them close to you. Some call it a child lease, I know one manufacturer had one that connected my wrist to my child's by the same type of cord used on phones (the curly one) its was called "hand holder". The one on the child's wrist slipped under a ribbon and then velco'd so that the child couldn't pull it off themselves. It worked wonders.

There are all sorts of gimmicks around to help us with our loved ones. Google or Ask are two places where you can type in your needs and it will help.

OR contact your nearest ALZ support group and they'll have books of stuff you can get.

thanks for helping with your Mom when you can. We are a witness to the fact that the caregivers need it even if they don't want it. On my part I feel guilty because I would just wait until Sister asked (which was hardly ever towards the end) and not just do it. My situation was a little different as to why though.

Your
CaringSister54

 
Old 05-05-2009, 08:44 AM   #3
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Re: Feeling real guilty

Dear Julie,
First of all, big hugs to you! (((((((Julie)))))))

It's hard having a loved one with Alzheimer's. It's hard to understand what they do and don't "get" anymore, and how their brains are working (or not working). It's a process to learn how to deal with it, and just when you think you have it figured out, she'll probably shift into another phase and you'll get to start all over again! Don't fret, sweetie! We've all been where you are. We've all had some reaction that we regretted and have felt guilty about. The best thing you can do is replay it in your mind with a different reaction, maybe just standing and encouraging her to get herself off the bleachers however she ended up doing it and quietly apologizing to whoever she was displacing, explaining in a whisper, "she has Alzheimer's and can't help it." That type of replay has helped me with my mother-in-law to have a better reaction the next time we were in a situation, even if it was entirely different. And then STOP replaying it! Let go of it! And please, please, let go of your guilt, too! You have no reason to feel guilty. You're doing the best you can. You're human. You have emotions. You can't just turn them off. There are sure to be times when your sister has to walk away and you'll be the one to step in. That's the nature of dealing with this horrible disease. Your mom is going to have ups and downs, and so will you and your sister. Don't beat yourself up over it!

I don't take my MIL shopping anymore. She wants to buy inappropriate things, plus she shuffles along too slowly. (I'm disabled myself and it was just too taxing on me.) She's never tried to get away from me, but I only take her places where my focus can be entirely on her anyway, just in case that should happen. I'll take her out to eat, or to my son's photography show, or to the park to take a walk and sit on a bench. Like you, I want her to get out sometimes and to enjoy her family as much as possible, but within a context that I can control. If shopping works for you except for her moving away from you, is there someone else you can take with you so there's always an extra set of eyes on her? Maybe between two of you, it would be more manageable.

I'm sure the wonderful ladies here are going to chime in. They've helped me so much as I've gotten used to being a caregiver. I would not be where I am in this journey if it weren't for them!

And here's a giant fluffy towel and a rock. Throw the rock as hard as you can and get your frustrations out. You can choose the target (inanimate targets only!). Then wrap yourself in the towel and snuggle down with a cup of coffee and try to relax in a guilt-free zone!

Blessings,
Emily

Last edited by BlueAtlas; 05-05-2009 at 08:46 AM. Reason: Grammar, blah!

 
Old 05-05-2009, 09:24 AM   #4
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Re: Feeling real guilty

Julie... big hugs to you and tons of towels. You are going to need them. Glad you could type out your frustrations here... isn't this just the best place!!

As for guilt... that is not allowed. We do the best we can in the moment with what we are given to deal with .... we live through it and learn from it... and go on to the next moment. Each step of the way we learn a little more about ourselves, how to deal with the situation, and go into the next moment better prepared. It's a work in progress. None of us are born with the ability to deal with this horrible disease that takes our loved ones away from us. So cut yourself some slack!! The super woman cape doesn't fit any of us so we don't need to even try to wear it.

As for the reaction of others... There are all kinds in the world. Most will see the episode for what it is. Daughter's trying to help their Mom. Our imagination of what they might be thinking is always worse than the reality. Some will be annoyed but that is out of ignorance and you have to feel sorry for them. Some will actually come to your aid and attempt to help. You can bet those are the ones that know and understand. Most of all you need to know that what other's think is so very unimportant. What is important is that Mom was able to enjoy her grandson for a while. If someone was accidentally bumped in the process... so what?? Nobody was hurt. They will get past it. You could always smile and mentioned that Mom has a cognition problem and most will be very understanding and made way for Mom. As my daughter says... Context goes a LONG way to foster understanding.

As for your reaction... sometimes it is just too much for our mind to handle and it shuts down on us. That's our own survival mode going into effect. Thank your sister for being there but there is truly no need to apologize. There will be a time when you are the one handling the situation and sister will melt. It's a matter of who hits their wall when and we all have our wall.

Dad going through his vascular dementia was difficult for me. He is my hero and watching him decline over the last 9 years was tough. But his has been a slow decline in specific functions and not nearly as devistating as Mom's has been. Mom has Alzheimer's and in 2.5 years she has gone from marginally functional at home as Dad's caregiver to a much worse cognitive decline than Dad. Even with years of long term care experience under my belt I still have those moments that you described. These are my parents!!! They were the rock of my existance and now they can't survive without assistance.

Dad ask me the other day why I was doing all this "stuff" for them. The answer came quickly. When I needed help growing up they were always there for me... now that they need help growing old I will always be there for them. I will lose it once in a while, I may even run away in tears occassionally, but I will always come right back and keep going. So rather than feeling guilty because you needed a few moments for yourself... feel proud of the fact that Mom had enough faith in your to make you the POA. Know what you have done for Mom and have enough faith in yourself to know that you will continue. One little bump does not define your entire experience

Love, deb

 
Old 05-05-2009, 10:52 AM   #5
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Re: Feeling real guilty

Dear Julie,

You wouldn't be human if you didn't feel guilty! But we don't allow it here. We have all been there, got the shirt and the gray hair to prove it! You just froze this one time. Trust me, you won't ever do it again. It was an accident that just occured.

We have all wished that we could take away this horrid disease that burdens our loved ones and our familes. BUt there isn't much that we can do. I know that it paralyzed my father when it came to dealing with my mom. He just didn't know how to handle her. I am a social worker by trade, and their only child by love and heart and it near broke my heart to watch how it hurt my father to watch mamma suffer and slip. Mamma had done every thing in the home so daddy was near helpless-and it showed. He was also proud and refused to ask for help-even from me. We suffered alot those early years. Strawberries in the potatoe bin, carrots in the towels, hamberger under the sink in the bathroom. Dirty clothes in the kitchen cupboards. You just learn to take those awful parts and tuck them away, far away.

Learn to look for the good parts of your Mom. Look for the bright spots that you can still find with her. If you don't feel she can do the bleachers-which would be frightening for an AZ. patient as there isn't backs to the steps and that is hard for them, then find something less hazardous for her-or have her sit on the bottom steps. You just need to learn to consider the event. Or if there are little league games, she can sit in the car. Once you start to thing these things through you will be surprised how quick you can come up with ideas. You just need to think of her as a large toddler. Unfortunately, that is about the stage she is at.

So vent away and don't hold it in...you are more than welcome to feel the guilt, just don't hang onto it......

 
Old 05-05-2009, 01:31 PM   #6
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Re: Feeling real guilty

Julie, try not to feel embarrassed, either by anything your Mom does or by your reaction. I found it best to stay with Mom at all times, never putting her in a position where she had to remember anything. But it is not that simple.

Most bystanders will only need one look and will know what is going on and feel very sorry for both her and you. People are much less judgmental than we think. Mostly everyone has had a parent or grandparent with exactly the same blank look in their eyes. They know. They don't want you to be embarrassed.

My mother's two outstanding ''embarrassing your children" acts were:

1. pooping in her pants at a family dinner, not knowing she had done so, and resisting being taken away to the bathroom for cleanup.

2. Coming out of my nephew's pool, feeling cold, taking off her wet bathing suit and parading around to the front of the house stark naked , where my brother and many other men were sitting on the porch.

Mom was in her 90s for both of these occasions. They lose the feeling of what is appropriate behavior.

Later we found that a planned and predictable day was much better for her than going out, going anywhere. It didn't seem to matter to her. It was easier for the family too.

Chin up - things get worse than this, and you will cope with them also!

love,

Martha

 
Old 05-05-2009, 02:39 PM   #7
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Re: Feeling real guilty

first i know how hard it is not to feel guilty, but it doesnt get you anywhere. when i take my mom from the nursing home where ever we go, people always seem to understand and that makes me feel a lot better. you are not alone.

 
Old 05-05-2009, 10:01 PM   #8
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Re: Feeling real guilty

Wow, what a comfort to find these encouraging posts.
Thanks
Lorraine

 
Old 05-06-2009, 04:47 AM   #9
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Re: Feeling real guilty

I Love all of you for caring enough to let me into your lives and letting me share mine with you. You are exceptional human beings.

When this happened I could not let go of the guilt. I talked to my Daughter about it, then I apologized to my Sister, and she said that we are here to lean on each other.

But still the guilt was eating me up and was taking over my thought process and I knew I did not have time to worry about something there was nothing I could do about. Then it hit me, the board of wonderful people I had spoken to in the past, and once again you came through for me.

I guess you honestly do not understand this crazy disease unless you have walked the walk. Reading you stories and having you open up your hearts and understanding that I did not know how to get through that moment, could only be understood by others who have been there.

I can not thank you enough for allowing me to come here and share in your life expreriences. I hope I will be as enlightening to someone down the road as you have been to me.

I am holding on tightly to the towel and the life line you all send my way, and I am letting go of the guilt.

But I am also scared because it seems like I am just beginning a long journey. I pray that I handle the next situation better and you are right when you say the important thing is that my Mother and my Grandson got to spend time together. Next time I will plan out the event better.

God Bless each and everyone of you, for being the kind, compassionate people that you are.

Love,
Julie

 
Old 05-06-2009, 12:03 PM   #10
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Re: Feeling real guilty

we`all have those moments where if we could we would crawl under a chair and hide we would, I once took my mom to the local seniors center for lunch, a place she goes often and feels comfortable, too comfortable, as it turned out she got something under her top denture she took them out and dropprd them on the floor breaking them, I looked around and of course everybody was watching, I just picked up the peices as asked if anyone had a spare set!!! everybody laughed even mom....I find humor works well in these moments. I laugh to myselve when I think of this I hope it makes you smile.you are not alone anymore you have us....other people will understand even help given the chance...

Last edited by jagsmu; 05-06-2009 at 12:05 PM.

 
Old 05-22-2009, 08:34 AM   #11
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Re: Feeling real guilty

Julie, please don't take the guilt on yourself. You're a good daughter for even trying and you're going through some normal emotions that happen to all of us at one point or another with our demented/ALZ parents.

I think all that has happened here is that your mom's action took you by surprise. I think if it happened again you would handle it quite differently now that you've experienced it and had time to think about it. Don't blame yourself,

Yet I do understand because if you read my earlier posts I too felt a lot of guilt. I still feel guilt until I think it over and see how unreasonable it is at times.

Hugs...

lv
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Old 05-22-2009, 09:53 AM   #12
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Re: Feeling real guilty

Hi, Julie!

Well, how nice to find a sister on the boards! You know, the "everthingismyfaultwhycan'tIfixthisnowIf eelsoguilty" sister! That's my hobby!

Seriously, though, Julie, the wonderful people on this board (someday, I may consider myself one of them - just as soon as I figure out what the hell I think I'm doing taking care of my father with stage 7 dementia) will let you know that there are a few guidelines to sanity:

1. No guilt allowed. Hard one for me, because guilt is my middle name.
2. If you mess up with your loved one or sibling, oh well! Accidents happen!
3. You will not be allowed to be hard on yourself. Good LORD. With all that we do? It's a wonder that any of us have a sane bone in our bodies. So, if you think you are super-human like Superman or Spiderman, cut it out. We are mere mortals, and allowed, therefore, to make mistakes, screw up, freeze at embarrassing situations (yes, Jule, we have all done it), drop the ball and totally blow it.
4. You ARE allowed to cry, but not for long. If you stay in your "funk" too long, you will start to believe your own negative thoughts.
5. We WANT you to depend on us. Shoot. I must post 4 new threads a week, and type 30 replies. I have been dealing with this mess with my dad for 4 years, and barely know all the questions, let alone any of the answers. These people on this board are fanTAStic, and I miss them desperately when I am away.

So, Julie, don't worry too much about being all things to all people. It's tough, I know, but the best we can do is honestly the best we can do.

Post often and a lot. It will save your sanity.

...lil' deb

 
Old 05-22-2009, 11:03 AM   #13
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Re: Feeling real guilty

guilt. I still haven't figured it out: are people who take it upon themselves to care for a loved one with dementia more prone to guilt than others? I ask because I did it, and felt guilty, my brother did it and felt guIlty, while our sister always had excuses why she could never, in no way, no how at all, take Mom into her house - and she, now that MOm is gone - has no guilt at all! In her mind she was the best daughter ever, went to see MOm way beyond the call of duty (3 x a year for 3 days each) and even had Mom to her house for 1 or 2 weeks every year BEFORE Mom got Dementia and sister had to put up with her telling her same old age old stories again and again, with much self congratulations for being so patient.

What is it?

My father in law was taken care of by 2 daughters in law. His sons did not have time, his own daughter couldn't (I forget why) and guess who has guilt for not doing it better or longer or for him dying on their watch at age 91? The two daughters in law who gave of themselves until they were depleted.

What's up with us?

love,

martha

 
Old 05-22-2009, 03:57 PM   #14
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Re: Feeling real guilty

Darned if I know, Martha.

I think that is a big part of my ill feelings toward my brother. He lives in CA, we live in CO, but the only time he has flown out here to see our dad is when I send BIG money his direction. The last time, $3000, and he stayed 3 days. Said he had to get back to work. Well, that makes SOME sense, but since then, and this was 18 months ago, 2 emails because I berrated him into it, no phone calls - none - and not so much as a freaking CARD for dad's birthday. Ok. He didn't know it was his birthday. But WE did, and had cake, and party hats, and presents...but the brother is simply oblivious to what it's like.

I feel all the guilt, because even thought I am doing everything I can, I feel like I should do more. Brother? Never gives it a thought.

Maybe they are more right than we are. All I know is even though I still have plenty of guilt, I know that when dad goes to his great reward, I will KNOW that I gave it my all. I have (and my dh and son, now) sacrificed a lot by bringing him into our home. And the guilt remains.

When you figure out the guilt thing, do let me know.

...lil' deb

 
Old 05-22-2009, 11:33 PM   #15
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Re: Feeling real guilty

simple..... to feel guilt you have to care enough to put others needs before yours. We do that every day. Those that are self centered and are unable to put another's needs before their own remain guiltless. It takes a selfless person to be a caregiver. It takes a selfish person to ignore the needs of their loved one. It actually all makes sense to me. Beyond that there is the river of denial which is a numbing balm for the soul. But with that numbness you miss so much in life. I like who we are much better than who they are And think of all that they are missing!!!!!

Love, deb

Last edited by Gabriel; 05-22-2009 at 11:33 PM.

 
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