Who's Crying Now?

When my brother and I were children there were times that playtime ended with one of us crying.  We'd cry because we lost the game, cry because it was getting dark and had to come in for bed, or cried because one of us was teasing the other.  When my own kids were growing up I could sometimes figure out how long it might be until someone was crying, mainly by the moods/teasing/noise/or sixth sense that all mothers develop.

So, I have experience with crying.  But now, I have no ammunition for my mother's crying.  She is becoming increasingly aware of her memory loss.  I really try to soften the blow, but too many times there is a visit, phone call, doctor's appointment or conversation that she forgets.  When it becomes apparent that she has no recollection of the event she is amazed that she could forget such a thing.  She recently asked me if any of my children are dating anyone special.  I told her that Dan and Scott are already married.  She wanted to know why she hadn't been to the weddings and I reluctantly told her that she attended Dan and Jill's wedding and walked down the aisle with Scott and Jeremy.  Of course she was surprised to have forgotten such an event.  And she cried.

This morning we had a similar discussion.  She asked about our family and I named each member with their ages and where they live.  She asked me why she doesn't remember any of this and I simply said that the problem sometimes comes with age, but she's in better shape than many people her age.  And she cried.  "What's the point of living this long if I can't remember any of these things?", she asked.  I am baffled for an answer.  All I hear is her anxiety and desperate attempt to hold on to the information and identity that is rapidly being sapped from her.  How do I answer and make her feel better when I'm the one that cried?

The Beat Goes On

The same conversation is part of my day, almost every day.
Mom: What is this place I'm in?
Me: It's a nursing facility.
Mom: Why am I in a place like this?
Me: We were following the doctor's suggestion that you need a safe place since you weren't safe at home any more.
Mom: I think that's blown out of proportion-- I was doing fine at home. So what's the story, I need to stay here forever?
Me: We don't know that--for now it's serving the purpose of you having people who take good care of you and make sure that your meals are cooked and that you're safe.  You know that's the most important thing for us to know.
Mom:  I'm very lonely here-- I don't know anyone.  I just got here.
Me:  Frank, your brother is on the same floor--he's right down the hall.
Mom:   Really?  How do I find him?
Me:  Turn left out of your room and then go to the end of the hallway.
Mom:  I haven't seen him here before.
Me:  I think you have-- you probably ate dinner with him last night.
Mom:  I really don't remember that.
Me:  Mom, we love you and want you to be safe--this isn't easy for any of us, but you know that you had to do the same thing for your father, and we all just have to do what we know will make someone safe.
Mom:  Yeah, I know, but I don't have to like it.

We sometimes go this route 2 or 3 times within a conversation, or in a morning.
I am blown away by the fact that life must be so frightening for her and others with dementia.  She truly thinks that she's awakening in a different, unfamiliar place each day with no recollection of arriving there. It is the most painful to hear her sounding so afraid and tentative.  This is not the person who was so self-assured and sometimes fearless.

The beat goes on, but it's a song without a happy ending.

The RX for the RX

When we visited Mom last week I had the opportunity to meet with her psychiatrist.  She was open to my assessment of Mom's behavior and mood.  I told her that I was concerned by her increasing time in bed each morning and the sleepiness that just overtakes her on most days.  We also discussed the anxiety that prevails each evening and leads to numerous phone calls about going home.

The psychiatrist was open to "tweaking" the anti-anxiety dosage in order to yield a less sleepy beginning to each day.  She also suggested that we monitor the change and report back to her in about a week.   So far, I have seen no significant change in the sleepiness or the nighttime anxiety.  This afternoon I had a conversation with Mom's head nurse who told me that the new medication schedule just is not working.  Mom is "testy" and has alienated several residents, including someone at her dinner table who now is afraid to eat with her!  The nurse made it clear that she will report to the Dr. that the meds need to be readjusted because her mood is untenable.

I am at a loss.  I don't want Mom to be sleeping until noon each day--she's then too lethargic/ misses her shower/ needs to be rushed to get dressed in order to be ready for lunch--it's just not a good scenario.  I also don't want people on her floor to be afraid of her and I don't want that meanness to be the most visible part of her personality, since it never was her manner in the past.

So, what do we do?  We need a prescription for the prescriptions.  My mother who used to just take tylenol or excedrin for a headache now is a pharmacy of drugs that have helped to alter her behavior almost as much as the dementia has.  I will leave the solution to the professionals.  But at this point, I may need a tylenol for the headache that keeps creeping over my eyes.

Happy 87th Birthday

Dearest Mom,
I know that your birthday was December 2nd but it's taken me this long to write to you because I needed time to process how I feel about another year that has passed.  We celebrated your birthday with a special lunch, cake, balloons and presents--much like so many birthday that have come before.  Your nearest and dearest who were able to attend were there.  You seemed really happy to have the day spent in this way and we were happy for the opportunity to make you feel like "queen for a day." Before I even got home you left a message on my machine that said " it would have been nice to have you at least call me since today is my birthday."

I have a new mantra for all the upcoming special days that we share--if you look happy at the moment, then I've done a good thing.  No longer will I agonize over the memories of the time that will elude you-- I will learn to hang onto those memories for both of us.  I will document your smile in pictures and I will try to replay your praise for my efforts in my head to ward off the feelings of guilt and sadness that always follow our time together. I will stop myself from asking you "remember when..."-- I remember when and that will have to be enough.

It's happening again

Just when I get adjusted to a level of mom's mental capacity there's a change, and it's never for the better.
In the last few weeks I've been told that she's had issues of confusion finding her room.  I now regularly get phone calls about her "missing male roommate"--not a male, and very much present.  Today, I got the strangest phone call--Mom left a message saying that she had gotten a haircut at "House Beautiful".  She wanted me to talk to her about meeting her and bringing her a hat.  The message was rambling and sometimes unintelligible, but she ended with her customary "I hope all is well with you." By the time I got home I was sure she had forgotten the call, so I didn't call her back.  But, the tone of her voice and the confusion within the message has haunted me the rest of the day.

AHHHH-- it's happening--she is reaching a new level or plateau in diminished mental ability.  The amazing thing is that with it all she can still remember my phone number-- I fear that it will be the last thing she forgets.

Yom Kippur

So today we fasted and prayed. The prayers were filled with hopes for health and happiness and for the prayers to be answered. There was the time of remembrance for all those dear relatives who are no longer with us--remembering them in happy times when our family was a whole, and praying for a time when we can feel complete and whole again.

Of course at that time I miss my Dad and wonder how aging would have affected him if he had been given the chance to grow old. I mourn the loss of him and think about how proud he would have been to see his grandchildren as they are now. He would have LOVED being a great-grandpa!

I also found myself mourning for the loss of the mother that I used to have. Of course I feel blessed to still be able to see her and speak to her, but the person that I mourn is the one who was strong, intelligent, capable and independent. The woman I now visit is just a shell of that other persona.

So on Yom Kippur it seems fitting to take a moment to reflect on all that was and all that we now have. So much has been gained, and yet, so much has been lost. I said a Yizkor for the times that can no longer be, and a prayer for the wisdom to remember those days fondly while relishing the new experiences that now fill my life....a day of reflection, sadness and hope.

So Now it's Come to This...

SATURDAY, OCTOBER 1, 2011

Yesterday, while sharing time with my dear friend at breakfast I got a phone call from the nurse at mom's nursing home. The conversation was based on mom's refusal to take a shower, YET AGAIN!! Now you really need to know that my mother was always clean and taught my brother and myself all about good hygiene, so this turn of events is clearly a manifestation of dementia.

The nurse asked me to talk to mom and I did.

Me: "Hi-- I hear you don't feel like taking a shower"

Mom:" Whose side are you on? Why should I shower after I get dressed? They should have told me that's what they wanted. And anyway, what's the big deal -- I'll shower another time"

Me: " I think they told you not to dress because they wanted you to take a shower and you quickly got dressed anyway"

Mom, yelling..." I'm not doing it! I'm already dressed... you wouldn't like it when you're 85 and you're not on my side... stop sticking up for them"

Me: " I'm on your side-- you need to smell sweet and clean. I'm coming to see you tomorrow and I know you want to be fresh for me"

Mom screaming at the nurse...." I'm not doing it! What about tomorrow???? What's wrong with you people? Don't you know that I'm 85?? (she's 86).

The yelling went on for much longer until I asked to speak to the nurse and told her that I wasn't able to convince her but I think they need to insist in some way.

I received another phone call from the nurse telling me that they did in fact insist and got her to comply. I don't know how they did it, and I probably don't want to know because I do know that Mom had to be pretty pissed about it, and really upset with yet another loss of control of her life.

So, it's come to this---I am not her full time caregiver ( and I understand why this is a good thing most of the time), but I am still the last resort for reasoning with her. I also know that this is not the last of it, nor is it the worst of it--it's just part of the spiral downward from which there is no return....