Expert: Mary Gordon - 1/25/2009

Question
My mom was just placed in a lovely ad 3 weeks ago as I could no longer take care of her as I have a heart condition and only one working arm due to multiple surgeries.  She could physically shower etc, but is a very high fall risk and will not use an assistive device.  She is probably in a Stage 5 or so; hard to say.
Problem is she does not want to be there and calls the police at night and tells them I won't come by and pick her up.  She will not acclimate yet and am hoping that she will eventually.
My out of town sister, alcoholic, drug abuser with some mental difficulties of her own, calls her and aggrievates the situation as she is jealous that my mother turned over her home to me over 3 years ago in the event this happened.
I was able to control the situation when mom was home by legally monitoring the phone conversations and having an attorney send her a letter to ceast and desist. I have no control now and do not want to disconnect her phone because in mom's mind, she is the "good daughter" and talks to her every day.  
Mom's money will run out in about a year and a half and I am desperately trying to get Vets allowance but that does not look positive because my father had a dishonorable discharge. In April 2010, she is eligible for medicaid  assist, but it won't be enough to keep her in a facility that I would not be ashamed to put her in (We live in Florida).  I am at my wits end.

Also, she says she does not want me to visit.  I don't know whether to visit or not. I am exausted by being verbally abused by her when I do visit.

I am going to show your response to my sister if you are kind enough to answer.

Thanks for your help even if it in just listening.  

Answer
Joanna, you need some time to yourself, to regroup and recover.

Caregiving is so relentless, you get worn down and strung out from worry. Its also insidious because it sneaks up on you - you are under more and more stress with time, as the person needs more and more help. The weeks around placement of a loved are particularly difficult for most people  - and its only been three weeks for you, so it's early days yet. Most people find they almost collapse once the person is placed. They just want to lie down and rest. It takes a while to get your life back when hands-on caregiving has consumed so much of your time and energy.

If your mother is being difficult and abusive, give yourself permission to take a break from her. She has no self control and no self insight, so she really can't stop herself from being miserable. She also has no perspective - she can't see all the effort that you have gone to and be grateful. With respect to your sister, your mom is kind of like a kid who is entranced by an irresponsible but charming uncle, and makes rude comments to her hard working father (i.e. you) about why can't he be more like Uncle Fred.  Your mom isn't seeing the whole picture anymore.

Does her phone unplug from the wall? Can you ask the staff to unplug the phone and remove it from her room during the evening routine? The police won't be too happy if she continues to call them for spurious stuff.

Your sister needs to get with the program. She is not helping your mother or you with her attitude. The sad reality is, your mother is being unravelled by brain damage. She is going to get more and more confused, less and less able, and need more and more help. Your sister should not be encouraging your mother to be difficult. She does not have to like what is happening to your mom. She can certainly be sympathetic to your mother's feelings, since the fact she has developed Alzheimer's and needs help is crummy and unfair. However, unless your sister is prepared to take on actual accountabilities and pitch in physically and financially, she needs to zip her lip with criticisms of you.

We had some similar problems with my mother in law's sister. She didn't think there was anything wrong with my mother in law (even when it was screamingly obvious), and encouraged my mother in law to resist all efforts to help her. Aunt Norah told her we were just being mean to her, that she shouldn't cooperate, shouldn't see the doctors, shouldn't get her affairs in order etc.  It was very upsetting and disheartening for my husband, and made a hard job that much more difficult.

Finally what we did was to write a long letter to Norah, explaining exactly what was going on, and asking for her support. I don't know why it worked, but I guess because we were able to chose our words more carefully than in a face to face discussion, she was able to really hear us. We let her know how hard we were trying and how much we needed her - and if she couldn't give us her loving support, than at least don't tear us down.

Your mother has a terminal disease. Both of you are going to lose her, probably long before her body actually dies. The next few years are going to be challenging in ways your sister can't imagine. It's going to be hard, and draining in every way, including financially. Its time to put away the petty jealousy and the competition and come together to look after your mother. None of the past is going to count for anything. Shortly your mother will not remember your childhoods, and the scorecards the two of you have been keeping will be meaningless. Lugging around a suitcase full of past grievances will weigh both of you down - time to just dump all that stuff. Ever red cent she ever had is going to be swallowed up looking after her, unless she passes away before the final stage of Alzheimer's - and it may sound horrible to say, but it's the fortunate that do. My mother in law lived a full two years in the last stage, unable to do anything for herself, unable to walk or talk or feed herself, use a toilet, dress, or even brush her own hair. You can believe that kind of round the clock care is not something most families can provide - it's back breaking, it's relentless, and it's heart breaking. It's also expensive - and even at the best of institutions, most families find their involvement is very much needed to ensure their loved one's care is appropriate.

Your sister has to recognize that your mother is like a child - and that you have reluctantly assumed the role of parent to her, because there was no other choice, and your sister wasn't able to step up herself. Unless your sister wants to pick up the load, she can't be critical of you doing what you have to do. She has to recognize that you are doing the best you can with what is available to you, and not interfere or bad mouth you. Positive contributions are all that is needed, or wanted in this difficult and exhausting situation.

Hang in with your mom. She will get used to it. Quite often asking to go home is not about wanting to go to a physical place. Its about wanting to return to a time in their lives when they felt safe and understood their place in the world, when things made sense. My mother in law used to ask to go home all the time. However, we discovered that she didn't want to return to her apartment, to our house, or to the house she spent most of her marriage in. She wanted to go home to her girlhood home, where she thought her parents and  sisters were all waiting for her.  Don't get into arguing with your mom or trying to reason with her. Deal with the emotions beneath the words, her fears, her need for sympathy and comfort. You pat, sooth, comfort, and then look for something to distract her so you get her onto some new topic.

When you are ready to go see her, it might also help to keep the visits short and have something to do with her planned for when you are there. Look through an old photo album together and get her to tell you about the people in the pictures. Bring something interesting with you - even a picture book about somewhere she's been. Bring some music she'd like and listen to it together. Go for a walk, or for a cup of tea. You don't have to stay for hours, or engage her in conversation if she is getting nasty. If you can't distract or divert her quickly onto something else, say your good byes and go home, and don't feel guilty. You have to look after yourself.

Just keep telling yourself, it is her brain damage talking. You can't take her behaviors personally. She isn't in her right mind. It looks like the mom you knew and has some of her mannerisms and personality, but it isn't the same person any more - and none of this is your fault.  

Hang in there. Be kind to yourself and don't beat yourself up - or let your mother beat you up.  

Mary G.