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.

Praying for something

Last night I had to deal with something that has never been mentioned before. Mom called and told me that she now prays to die and understands why people commit suicide. She has been increasingly depressed in the last few weeks and I've discussed this with the nurses. They have, in turn, spoken to the doctor who is increasing her anti-depressant and recommending talk-therapy with the psychologist. Of course we won't see any changes right away so I probably need to steel myself for more phone calls about death.

Mom is still lucid enough to know that she hates being in a nursing home and finds it "boring." She attends all the social events (and there are more things to do in this facility than in many other places) but she is not capable of understanding that she is not able to take care of herself. She asks me each day why I can't "take her in". Then it is I who does the praying--for strength, patience and fortitude to face the guilt that this question always brings. I've tried to explain that there aren't any other people her age here, or activities to engage her. I've tried to also explain that I really can't give her what she needs. She is savvy enough to immediately tell me that I just don't want to change the freedom that I now have--no guilt there! Part of it is that she's right! I can't see how I could really give her what she needs while still maintaining any of my life--is that selfish? realistic? Only G-d knows the answer to that one.

So we each pray for our solace. I pray that she stops praying for death and starts praying for acceptance. I pray that she doesn't come to hate me. I pray that peace comes to her in her old age. Finally, I pray that I never live through what she is living and that my children will never be forced deal with me the same way. So, I suppose I pray for peace for us all.

So,

Mother's Day-2011

For now, my memory is still functioning at it's normal level--not to brag, but I do remember things pretty well. And so, at Mother's Day all those remembrances of Mother's Days from the past came flooding back.

*I remember being 3 years old and visiting my grandmother and grandfather's house and playing in their backyard--the mint was already starting to grow in the garden and I can still smell it.

*I remember my Dad calling me into the bedroom to "sign" a card for Mom.

*I remember learning (from a friend down the block) how to use azalea cuttings to make a corsage for mom-- I continued that tradition from the time I was 9 or 10 through college.

*I remember my first Mother's Day--how proud and happy I was to be part of the sorority that mom was in.

*I remember the first time Danny, Scott and Jeremy each wished me a Happy Mother's Day and presented me with their projects/ paper flowers/ grass heads made in school--the sheer joy of seeing their faces filled with pride, and my happiness to be a part of that.

*I remember the Mother's Day that I was undergoing chemo--wondering if I'd ever live to see another Mother's Day. Who would nurture and love my boys more than I?

*I remember so many other Mother's Days when we would visit Mom or bring her home with us to share a lunch or dinner and the happy look on her face when she shared the day with her grandchildren. Mom no longer remembers those days. She knows who I am and tells everyone at the nursing home "that's my daughter". And so a new set of memories begins.

Our lives are given meaning by the shared remembrances with loved ones. Our history is marked by the times we've been together and interacted in a nurturing environment. My memories of my mom (and family) all glow with that memory. Yet, the one person who gave so much of that to me is no longer the keeper of the memories. Yesterday, we brought mom a corsage that she loved, but she no longer remembered the ones I used to make from azaleas. We shared a meal just as we have for so many other Mother's Days before, but she had no recollection of the ones from the past. And we brought her a gift of clothing just as we have so many times before. So much of it was the same, and yet it was all different. When I kissed her goodbye she seemed so small, so alone and vulnerable. All the memories of the past came flashing back and yet she wasn't the same person I remembered. No matter what we did to make the day special for mom, without the remembrance of the days that went before, it never seems like it's enough. I keep hoping that if I do a little more the glimmer of the mom I loved all these years would shine through. Unfortunately that won't happen.

I am now the keeper of the memories of our family. I will guard them with all I have for they are the things that have shaped me and given meaning to my own mothering. I now have the joy of a phone call from grandsons who are the promise of continued family memories and the voices of my children who now also hold the memories of grandparents and parents in our family circle. I wonder if any of them truly understands the importance of what they hold within them. Surely I never did while I was busy with schedules, work, cleaning and helping with homework. So, I hope that all their memories are good ones. Perhaps that's all a parent can wish for--that when time passes and life's pace slows just a little, they can reflect back on the good times shared and the love that was part us.

For now, I remember... Happy Mother's Day, MOM!

Passover-- our celebration of freedom

So it is now Passover once again--and my mother is in her second year of captivity. While Jews worldwide are reveling in the freedom from Pharaoh, my mother agonizes over the fact that she is no longer free to follow her own path.

In truth, we are all captives of something. That is what makes the Passover seder so meaningful--we can all gain hope that some day we will experience a new freedom--freedom from pain; freedom from guilt; freedom from a boss who just doesn't "get us" freedom from money problems; freedom from health issues; or freedom from responsibilities that weigh us down. The seder is all about the hope that G-d will hear our prayers and deliver us to a life that doesn't enslave us.

I was really happy to share a seder with my mother (and uncle, too) this year. I attended the celebration at their nursing home and allowed myself the luxury of remembering the wonderful seders that we used to have at home, led by their father-- my grandfather. Of course, we all used to beg Grandpa to shorten the seder, but looking back at it now--it was perfect. The table was always set with the best dishes and silverware and all the special foods cooked by mom. We all read something and shared in the warmth that only loved ones and good food mixed with tradition can give you. This year, all mom was really interested in was the food. She was happy I was there and so, even though it was nothing like the seders we used to share, it was successful.

None of us knows how many more years we have ahead of us. We complain about simple or silly things, but at Passover we can be thankful for whatever freedoms we presently have. We can hope for "next year in Jerusalem" or hope that the things that hold us captive this year will somehow change within the year(s) ahead.

Give me Patience, give me love, give me strength

Mom has not been feeling well for the last few days--she, and many others on the floor have a stomach virus. This has resulted in her feeling very alone, deserted, depressed, angry and forgotten. What's making it worse is that the nurses have indicated that they're discouraging visitors, so I can't even go there to alleviate her angst.

The result has been at least 5 phone calls each day with complaints about missing clothing (pieces that became soiled due to the virus, and needed to be washed), and anger about our decision to place her in the facility. I've been scolded for not consulting her about being there and I've been told more times than I can count that she would be happier at home taking care of herself. I was told, today, that the doctors recommend nursing homes because that helps the homes make money and the doctors get a kickback; and that she could have been a doctor since she knows how to take care of herself and everybody else.

I'm worn out. It's not that I don't feel sympathetic for her unhappiness. I really do! In fact, that's probably why the calls get to me the way they do. I understand how she feels, and I wish with all my heart that she could have spent her "golden years" in a different way. It's just that we couldn't find another way to keep her safe and she just doesn't understand our need to protect her. She thinks she's just there temporarily for this virus ( has no concept of the 14 months that have passed since she lived at home); and she's angry as can be that we didn't consult her when making the decision.

I pray for patience and strength to be able to weather the brow-beating and not become apathetic or angry. I pray for her to finally accept this new and unpleasant part of her life without hating me. Finally, I pray for the future to be less angry, less stressful, and the gift of an occasional glimpse of the person who used to be my mother. We all pray to get old--we just don't know how that will turn out. I pray for her to find some peace from the old age that betrayed her.

For the strength of a battery

I have had many strange phone calls since my two elder relatives have depended upon me to be their link to the outside world, but yesterday bordered on an episode from The Twilight Zone. First, my uncle called to say that all of his hearing aid batteries had been stolen. (For those of you who are not familiar with nursing home life, this is both a reality and a paranoid obsession with the folks who live there). I calmly told him that he could easily use one of the batteries that mom has, and I would bring him more of his own, the next time I visit.

Two hours later, I got a phone call from the nursing home's social worker who informed me that my mother didn't think she had any batteries (I know she has!) and that she wasn't permitting anyone to look for them in her room--for fear of--you guessed it--they would steal her stuff!

I pretty calmly told the social worker exactly where the batteries should be in mom's room. Then and asked her to please get mom. This took some doing, but finally she convinced mom to come to her office so we could talk. I again, calmly explained that her brother needed the batteries, and she could help him hear for the next few days until I can get there to deliver new batteries. Mom was adamant about not having any batteries, and insistent that no one but she should look for anything in her room. Remember that mom is visually impaired, so looking for anything, especially in late afternoon diminished light is a terrible challenge.

This is when The Twilight Zone episode started. I went around and around with mom trying to convince her that she did in fact have batteries in her drawer, and that it would be okay to share them with her own brother! I think I handled myself in a rational manner and avoided screaming that this conversation wasn't worth the time we were spending on it. I never raised my voice, but repeated my plea for her to allow someone to help her find the batteries and for her to rest assured that I would replace them and make sure that no one stole anything from her in the process of finding them in the drawer.---All of this for a #X$%@ battery that is the size of a pea!

Here's the best part--I don't even know if they found the batteries and used them. The social worker and my uncle never called back, and mom had absolutely no recollection of the conversation when I spoke to her later in the evening. She did, however, ask me if she really has batteries there???

AHHHHHHH--I remained calm, and just said "I think you do have a few--I'll help you find them the next time I come to visit."

To those of us with other things to occupy our minds this seems trivial and you might wonder why I wasted time writing about it. But, for the people who spend enough time with the nursing home group it's easy to understand how you can get dragged "down the rabbit hole" as my son calls it. All I want to do is help smooth things out for the two of them, but what invariably happens is that THEY get smoothed out, or they forget the whole thing, and I then need two hours to decompress from being part of the vortex that is their life at present.

I'm feeling the tug at both ends

We just returned from a wonderful visit with our grown children and grandchildren in North Carolina. Not only did we love the moments of cuddling and stories to be read, we were treated to seeing a concert, a trip to the best life and science museum, and time spent with the southern part of family. And so the tugging at my heart strings becomes stronger.

We've talked a lot about moving to North Carolina. We've looked at many wonderful condos, and look forward to the time that we can pull up stakes in snowy NY and enjoy the milder southern winters. We hope to be able to free ourselves of some of the tedious homeowner tasks and enjoy living in a newer place with amenities on site. Of course, being able to spend quality time with our adult children and those wonderful grandsons makes the move even more inviting.

The caveat to the whole plan is the senior part of our family. The elders don't want to be moved far from the place they've lived for their whole lives, even if it does mean that they would be able to see the youngest members of the family so much more often. Additionally, the process for moving them is a complicated--needing precise timing when rooms become available and the annoyance of reapplying for Medicaid in a new state. So, what to do?

I feel compelled to give the elders what they need for as long as they need it. I also feel torn because I could become a lot older while giving them what they need. Right now, we are capable of moving, and actually look forward to the new adventure. Who knows how those things can change? If I could, I'd move within the next 6 months, yet I don't think that will happen. I am being tugged by the feelings of commitment, and my own yearnings. It should be interesting to see where I end up.

Sadness Hangs in the Air

My dear friend's mother and aunt died last week. The two sisters were not to be separated by death, so they died only 2 days apart. We attended the wake and the mass to offer what small consolation we could to the family.

Today, after the funeral mass, we went to visit my mother and uncle. I think I needed to do this to support my own opinion that I am, indeed, doing what I should for my mom. You see, it never feels like enough-- I always believe that I could somehow make her feel more connected to the present, less foggy of eye and spirit, and generally lift the haze that now endures within her. Such are the musings of someone who likes to be proactive and who hates to see mom the way she now is.

I busied myself with straightening clothes and replacing hearing aid batteries, but also found stashes of hoarded cookies and medication that was never swallowed. I immediately addressed the medication issue and was promptly yelled at by mom because she believed that I was tarnishing her reputation as a smart person with the nurses. My reward for caring was being told that I have no respect for my mother!

The sadness hangs in the air. I am grateful to visit my mom and feel that I do what I can. But, watching her decline, arguing about things not based in reality, and losing the person piece by piece brings a heavy sadness to my very core. I leave her exhausted not because of the work I do or the trip to get there. I am worn out by the ever changing landscape and the vacant look I sometimes see in her eyes. My mom is already partly gone to me but the duty and responsibility to honor the person she once was remains.

Valuable Family Time

Last week we were lucky enough to have our entire family together--this is quite a feat, and we're happy that a major snowstorm came AFTER everyone arrived. We were snowed in together, went sledding, ate, talked, built with Legos and visited mom. Actually due to the bad weather that nixed a total family gathering and lunch, we went twice with different components of the family.

The first visit comprised of Larry and myself, Jeremy, Scott and Stacey( the engaged couple) and their spirited puppy (I was amazed that the nursing home allowed him to come upstairs). I was so happy to see the years lift from mom and Frank's faces as we discussed the plans for the wedding and watched the dog sniff around. Mom asked ( and re-asked) what Jeremy is studying and where they all live, but she was thoroughly engaged in the conversation and loved seeing all of them.

The second visit that was only 2 days later brought tears to my eyes. It was poignant to see Asher and Jacob hesitate as they maneuvered around a walker and a wheelchair, but eventually they both warmed up to talking to the senior relatives. Of course, belated Hanukkah presents given by mom and uncle helped make the segue, but I credit the parrot on the 5th floor for engaging them and helping them deal with a visit that might put off many small children. Additionally, I know that Dan and Jill frequently mention great-grandma and uncle Frank so they knew they were with family. We took many pictures and for that I am grateful--this tangible evidence of the visit is essential for mom, who probably won't remember that we were there. I rarely see mom so animated as she was with her great grandchildren--she clearly loved having them around her and they seemed to be fine with spending some of their precious time with her, as well.

For a brief sliver of a morning, I basked in the time shared by the four generations of our family and patted myself on the back that we were able to surpass blizzards and the obstacles of traffic and time constraints to pull this off. It doesn't matter if she remembers it, because all of us will, and that's enough for me. So it begs the question-- do we move these older folks and ourselves the 500+ miles to NC in order to facilitate these family gatherings on a more regular basis? Or, do we accept that these times come maybe once a year and savor the moment when they occur? This is the million dollar question for which I don't yet have an answer.