Expert: Mary Gordon - 1/27/2008

Question
hi
  i hope you can help me . i have wrote you a few times before. we found mom what i think is a good doctor,he sees alot of people with alzheimers. we are in the phase where we are at the point of looking into a home. moms not sleeping at all and she is having nights where she screems and says she is scared. i dont know what to do to help her.i try to comfort her and tell her that every thing is ok and that im right there with her but its not helping .the doctor has her on meds and he keeps doubling the mgs but its not doing any good is there any thing i can do to help her not be so scared? im at my wits end .all this is so sad and i hate to see my mother go thru this . she gets really mad at me and tells me she wishes i was dead and burning in you know where.please tell me what to do . i love my mother with all my heart and this is killing me .im so scared of letting her down.i dont want her to hate me .she is in the end of stage 6.she still goes to the bathroom but i have to go with her or she dont pull her panties down only her pants. shes getting to where she dont know how to use a fork she holds it and eats with her hands sometimes .  thank you for being here for me                                                                                                                                                                                            sandy

Answer
Hi Sandy,

I don't think you should feel guilty or like a failure for considering a home. Things are at the point where she is unhappy and upset, and you are unhappy and upset, and it isn't doing either of you any good. You don't want to spend your time frustrated and angry with each other, or resenting each other. Your real job is to love her and look out for her interests. That doesn't mean you have to do yourself, or even in your house. She's confused enough that she is unlikely to be really at home no matter where she is. Nothing is going to feel or look right to her, and sadly, nothing anyone does can help that. My mother in law wanted to go home, but where she really wanted to go if you quizzed her, was to the house she grew up in - that had been sold 60 years before. She wanted her long dead parents, and sisters. What she really wanted was to go back to a time and place in her life where she understood what was going on, when she felt safe and loved.

In a care facility, they not only have special equipment and facilities to make the caregiving and clean ups convenient, but they'll have all kinds of special activities that she can take part in. It would be hard to offer so much variety in a home setting.  There will be lots of people around to socialize with. Staff come to work fresh in the morning, and they get to go home at the end of their shift, and take vacations - unlike family for whom the caregiving is 24/7, with everyone up half the night, never getting enough of  rest or time to themselves. At the facility, there are always extra hands, and staff can walk away if they get upset and let someone else take over. Staff also don't have a long personal history with the person, so they aren't paralyzed with guilt or grief. They don't take behaviors personally.

If you keep this up, you are going to make yourself sick. If you get sick, you can't do anything for anyone, let alone look out for your mom. You have to take care of you. Lots of people love you and need you, so you have to give some thought to how this is affecting you. Your mom would not want you to be driving yourself into the dirt trying to look after her.

I know you are feeling really upset about the idea of her going into a facility, but I'm willing to bet you money, once you make the decision and get her moved - and see how well she adapts - you will wonder why you didn't do it sooner. This is the really hard part - trying to make the decision.

When my mother in law first went into the assisted living facility, we felt like the weight of the world was taken off us. We hadn't realized what a toll so much worry was taking on us. We were hugely relieved to be able to sleep and relax, go out, go away for a holiday, and not have to worry all the time about what was going on, or what she was getting up to.

If you can find a good place, you will feel much better.

By the way, the toiletting problems and not knowing how to eat are pretty normal. In a lot of ways, she's like a 2 or 3 year old, isn't she. Its kind of like she's going backwards. I really think now is the time - if you are having a hard time now, what will you do when she is completely incontinent. From here on, it gets harder, because they need more and more complete physical care.

Hang in there, and go check out some facilities that specialize in dementia. The best ones will also have nursing home care available, so she can stay there even when she gets worse, becomes incontinent and also stops walking, and needs heavier care.

Thinking of you. You are not letting her down. You are doing the best you can, and making sure she's okay. Give yourself permission to check out your options and don't feel guilty. Your mother needs you healthy and sane!!

Mary G.