How do you cope with the guilt of doing what you know you have to do? In my post "ruining things" I talked about taking scissors and markers away from Mom because she was wrecking clothes and writing on walls. Now I had to take the phone out of her room because she was making angry garbled calls to business places that she didn't remember making. I told her the phone was broken - and she believed me - for now. But I feel guilty. With all the decline lately my brother and I are thinking we should activate her application for nursing home as maybe the assisted living place doesn't give her enough supervision. She will HATE me for that and I don't know how to tell her that she will be moving. She will have to give up her private "apartment" and have a roommate - which she will hate. I feel guilty for doing this and yet I feel like there is no choice. We can't just wait till something really bad happens. So guilt. I bet every single person has felt this one. Any ideas on how to make it go away - the stress is killing me.
~Hannah

Hannah, I totally understand how you feel. I had to remove Mom's things and limit her activities - first, the phone hadda "break" because of the Shopping Channel; then the scissors hadda get lost because she cut the tip of her big toe off trying to do her toenails one day (Mom NEVER had dull scissors); then, all her sewing stuff hadda go into storage because she was leaving needles everywhere, cut the cat's whiskers off with the pinking shears I left when I felt guilty about taking the other scissors, etc. etc. Each removal hurts me because I remember how sharp her mind was and I can see how incredibly bored she is... At first, she wouldn't do any of the craft things I tried, but recently, I got the idea of seeing if she would color those velvet-flocked designs and pictures. She started out slow, but now she's a coloring FOOL!! She cannot sort things or organize, although she still tries... sometimes, I realized that she told me she didn't like something or didn't want to do it because she was trying to hide from me her inability to handle the task... She can do SIMPLE jigsaw puzzles that are geared toward young children (ones with few, BIG pieces). My Sis sent her a "talking" picture album where members of the family could record a quick sound clip that she could hear when she touched a circle on the photo page. I have gotten her to TRY things by telling her they are for others - like the flocked pictures are to go to her great grands, etc. She probably wouldn't have tried it for her OWN amusement, but when I told her that kids are nutz about those flocked things, she was willing to try to make a gift for them.

Have you mentioned this to her doc? It may be that her meds need adjusting... Unfortunately they never remain the same during this long disease process...

As for getting her to bathe - I have gotten away with a LOT by telling Mom it's doctor's orders. You also might try telling her that it is a rule of the facility where she lives - to keep down on bacteria. Be SURE to get a nurse or someone to back you up in this white lie...

PLEASE don't feel personally guilty about this stuff... It is not YOUR fault that your mom has a degenerative brain disease and her abilities are declining. It DOES hurt to see them so isolated, bored and adrift in space and time... Protecting our loved ones is Priority #1. At first, we take over their business things that they can no longer handle - and we feel guilty (and they help us along that path by making remarks, arguing, etc.). Next thing ya know, we've got their car keys, then we won't let them live alone, etc. It DOES seem like we are controlling ogres, but that's just the nature of the disease. We protect them from people who don't "understand" and take advantage of them or say mean things to them... We protect them from poor health care and change docs and nurses and even residences if we think someone is not doing their best for their care.

This is where the detachment thing we often refer to comes into play. SURE, you're a big meanie because you won't let your diabetic father eat a carton of malted milk balls! I try very hard to be sure when I won't allow my mom something she wants that it IS a real hazard and not just a convenience for me... Despite Mom's propensity to use her water glass for EVERYTHING under the sun you can think of (and a lotta stuff you would never even wanna know about!), and of course, I have to clean up any and all messes, I STILL keep a FULL glass of water within her reach because she DOES actually drink the water from time to time when she's not using it to soak her color markers or some other bogus activity. At least she doesn't try to DRINK it after using it for unauthorized activities... if she did, then I'd have to remove it for her own protection.

This gets to ALL of us at times... I can't tell you how many times I have had to leave Mom's room so I could go out on the porch and have a crying jag... Sometimes it hurts SO acutely to see what's happened to them and how miserable and frustrated it makes them feel... it's HARD to be the bad guy where the buck stops...

The guilt is needless, but the sadness that is right behind it is important to get to - it's part of the grieving process. We start grieving for our loved ones long before they die, and it comes in little bursts when we are needled by guilt, outbursts, anger, etc. They are slipping away from the people we've always known them to be and we can't reel them back no matter what we do...
I know your mom probably helps you feel guilty, but every time you really start feeling crummy, please remind yourself that you ARE doing the very BEST you can do for her care. Some folks don't care at all and your mother is blessed that you actually DO care about her well-being. She'll probably never thank you nor acknowledge all the things you do for her, let alone all the upsetting decisions you have had to make in pursuit of safety and good care for her. You will have to do that job for yourself since she cannot. Please remember to soothe and comfort that part of you that gets upset with the daily proofs of your love and consideration for her. The responsibility you have assumed for her is HUGE and you work very hard to keep her comfortable. Sadly, no matter what all you do, it'll never be enough to make her whole again... it takes a LOT of courage and intestinal fortitude to keep rising to the occasion despite the obvious outcome...

Guilt is one of the most useless emotions that humans possess. Whenever you start ragging yourself with guilt trips (probably with HER voice in your head ), try giving yourself a compliment and a hug instead. It hardly matters what people outside of us tell us - what matters is what we are telling ourselves in our internal dialog! Do your best - that's all ANYONE can do and when decisions become tough, think them through and make them then go take a nice bath and cry in the tub. It's HARD to be a totally grown up person in charge of a parent!

BobCat, when my mother fought taking a shower I would tell her she smelt bad and no one wanted to be near her.
I have to do the same when my hubby fights having his colostomy bag changed and his external catherater.It may not always work but we clean him one way or another.He has to be washed and dried as his medicine and him naturally perspires.With this he gets fungal break outs.Now they can cause quite an odor.So we keep doing what needs to be done for his well being.Then , when all is done I will ask himif he feels beter, yes.Just getting to that point is the challenge.But I am determined with him as I was my mother.I even make promises with a favorite treat

Hi, Sweetie, This is a rough go. Try to keep in mind a statement by Winston Churchill, basically saying, a politician does the popular thing, but a statesman does the right thing even if it's not popular. That's If we are the responsible party, than we have to be responsible, even if it's hard. A care giver can't be doing always the thing that makes them popular. Sometimes, it has to be right. Don't be guilty. hard I know. Mom's a piece of cake compared to what some on line here go through, but Wed. she is supposed to get a shower from her caregiver and because of a cold she had, she got it in her head she could get out of this. She got out of it for a while, but two weeks is enough of sponge baths. I had to pull the stops on her reluctance, but it is my job to do that sometimes, her other caregivers aren't family, and don't have the clout or the secret ways to jerk her chains. Horrible, I know, but I told the prissy woman that I could smell her. Off to the shower she went. Don't ever feel quilty about doing what needs to be done. I say that to me as much as I say it to you. And some time soon, you will be welcome to quote me back at myself. I'm counting on it.

Oh baby it definitely is. How can you not care for someone, take away the things we have to that give them so much pleasure and not feel bad about it at times. I just went through a really big patch of guilt here over all these things Im taking from my mil recently... its ridiculous, if you saw her room 2 months ago and then today, you'd be like Dam! Where did everything go?! But its just not safe anymore to be left alone with anything that could cause harm to her or me for that matter. I mean jeeze I got sucker punched right in the kisser by her a few weeks ago trying to protect her from herself...their just not capable anymore of good judgment. So this is what we have to do

Thanks all for the pep talks. I am going to try and think of it more like "protecting" than "depriving". I also tell myself that it isn't me taking things away - it is the disease. The guilt seems to go away some times and then washes back...I expect it is like that for everybody in this situation. (sigh)

What we are doing is using all the skills provided to us from our parents to protect them from all dangers.Our parents did things we thought were over protective and mean spirited.When we look back and reflect they , many times saved us from our selves and other forces that could have caused us harm.They gave us enough space to do things but warned us to be aware of the consequences.They knew and protected us, we know and now we protect them.
Think of the alternative if we did nothing and something happened that could have been prevented by us continuing what we were taught.It comes fool circle.We would only hope those who follow will do the same for us

Hannah, I don't deal with that level of dementia, Mom is only "senile" because she can't keep up and has given up trying to keep up with the modern world. She tries to cooperate with any changes we feel is for her best interest, but that doesn't mean the changes don't come with guilty feelings. I remember when I talked her into "pullups" instead of just a pad in her panties. Fortunately she has the awareness to make bargains with me still, and that's what we do. Still, everytime we have to negotiate her level of needing help, I feel I am robbing her of one more piece of her dignity, and am scrambling to convince her (and me) that it will protect her dignity. For us, after a bit, she gratefully, and even demandingly accepts the changes.
This is a period of very rough going. Every one who gives care has limits, physically, emotionally, and temporally. You knew them at their best, and need to seriously ask yourself, "What did they raise me to do with my life?". Sometimes, to answer that Q honestly, you have to acknowledge that it wasn't to run yourself into a breakdown on their behalf. From all she told me as I was growing up, and the examples that she gave, I know that she would be really PO'd at me if I let her situation, stop me from living my life. I am fortunate that I haven't been hit with that yet. So far, I haven't had to make those choices, but if and when I do, I hope I'll be able to keep in mind the life she stood for, and put aside guilt for what is beyond me. Best of luck coming to terms with reality. Plase be there for me when I get smacked upside the head.

What mae says is so true.

I've raised three children to adulthood. I have no reason to feel guilty that I made them bathe, go to school, eat nutritional food instead of desserts, and forbade them to jump off the roof with a parachute made of a bedsheet.

These elders have the decision making abilities of a child, so must be protected not to be "mean" but to be kind. Of course, there is the difficulty that they are NOT children and can't be handled in exactly the same way. But the fact remains: most of them have the common sense of a four year old, just in an adult's body with memories of having lived as an adult.

Hannah, we all come to the point where we are the enforcers.We have to do the neccessary things to keep the afflicted free from harm or creating a dangerous situation.You cannot make decisions based on guilt.You have to not think with your heart and use what we know as common sense.We all will second guess our selves but that is normal.Just make all decisions when you are not under alot of stress.Trust your self

We just went through this, i.e. having to transfer her from assisted living, private room to a shared nursing home room. The AL facility had advised us that it was no longer safe for her to remain in that area as she needed more supervision and care than they are staffed to provide.

Sometimes the doctor is able to help by hospitalizing them, in our case to investigate some pain she'd been complaining about, and then releasing them to rehab in the nursing home. It made the transition easier on us, although she continued for some time to ask to be taken "home" or back to her apartment. She seems settled in now, and doesn't seem to remember her other apartment most of the time.

We were permitted to choose among several roommates, and have found that she actually seems to be enjoying the lady she's with. They are both well matched in habits, etc. and we were advised that it might be good for both of them to have that companionship.

Hannah give it a minute! Baby I did all this and then some and now Im onto the compulsiveness..ugh trust me in a moth you wont feel guilt.
What do I mean by that you ask? Well Look at it from my cheap seats (just a little funny tryin to git ya to laugh here cause I know how you feel ) I sit here daily watching my mil do things that harm her whether its with a pin a pencil a brush an emeryboard a comb obsessively filing her nails (this is her newest kick) on a bed post an arm of a chair the commode I could go on... the wall! it never stops...I take things away to keep her safe and even her screams of protest dont bother me for I know Im doing it with her safety in mind. Sure I do have my bad days but you have to detach... your frustration is that your trying to control it your taking it personally like your doing something wrong and you simply cant do that. Just take the things away when shes not looking and give her a stuffed animal or a video to watch (she must have some favorites)
Baby your not doing anything wrong at all. Your keeping mom safe. If you were doing anything wrong I can tell ya right now we would say so Give yourself a pat on the back for coming this far