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....

A time to look forward and a time to look back

This weekend our son Scott married Stacey. It was a wonderful wedding in a pastoral setting in New Hampshire. Everything about the weekend was lovely--the bride (who is a beautiful person in all ways); the food ( much of it prepared by Stacey); the weather; the people and the relaxed atmosphere. It was picture perfect to see our son and his wife truly enjoy the company of close family and friends--the sheer joy on their faces was everything a parent could wish for their child.

All weddings present time to look to the future of the bride and groom. The wishes for good health, happiness, success, friendship and a life of dreams come true are all so genuine. It is also a time for the parents to reminisce about their child's life as a baby, child and young adult. It's a time to also think of ourselves when we stood side by side and took our vows. It' a time to remember all those who stood with us and wished us well in what seems like a minute ago, but really is "ancient history".

Then came the time to miss all of those who came before and helped to shape our lives and the lives of that sparkling bride and groom. I was especially aware of missing my sweet dad who would have loved a party on a farm in New Hampshire, and my mom who always loved to travel but couldn't possibly make the trip this time. I thought of my uncle whose presence was represented by a guitar solo played by his talented nephew, the groom. These were fleeting moments in an entire weekend. Yet, the pause was necessary for taking stock of the passage of time.

I even looked at my adorable grandsons and projected the day that they will stand beside the woman of their dreams--of course I prayed to be there to share it with them. I also prayed for their happy and productive futures and became misty-eyed at the notion that in no more than a blink, the young will be fully grown and the middle aged will be the older generation. Such is the way of the world.

Weddings put it all in perspective--we all share the bond of new love that ages like the finest wines. We all hope to realize our most daring dreams. And, we all need the time to remember where we came from before we can move forward to our newest adventures.

Thanks to all those who came before who made the wedding of today and the hope of the future come to be a reality.

The same thing every day!

I never liked the movie Groundhog Day but now I'm living its script. At some point each day I receive a phone call from Mom about going home. Sometimes it's just: "I have good news, I'm ready to go home." Sometimes the tone is much angrier and accusatory: "I don't see why you made the decision for me to spend my life here and you made a very bad judgment. A good daughter would have me live with her. I don't need much care and this place is not my choice."

I have now spoken to nurses and social workers in search of the perfect answer to these phone calls. There is no perfect answer! Each day I struggle to extricate myself from the web that the phone call traps me in and each day I either breathe a sigh of relief or struggle to recompose myself for the next encounter. Mom never remembers that we've spoken about it so the scene replays and replays. But, I remember! This is clearly a case of "be careful what you wish for." I sometimes wish she'd forget my phone number--that will mean that her memory has diminished again; I wish to not take the phone call--that means that I feel guilty for abandoning her which is part of her accusation in the first place;I wish to not let the call touch me or bother me--that means that I have changed from the person I've been for over 60 years--not a change I'm so willing to accept; and I wish for this to end--we all know what that means!

So, for now I need to field the phone calls and struggle for the correct answer du jour. Some day I may just come up with the universally great answer--that would be a wonderful way to move the calendar away from February 2nd.