For the Love of Mom

It seems fitting since tomorrow is Valentine's Day to think about how to make mom really happy on the day of love. This has been increasingly difficult since my Dad died 20 years ago. Of course, I could clearly understand her sadness on the one day each year that people declare their love. But, just as I was getting the hang of that one--telling her about the accomplishments of her grandchildren, bringing a box of sweets or sharing the cute things the great-grandchildren have said, I am now in a new arena. With mom now in a nursing facility, the only thing that I could possibly say to make her happy would be to tell her she's going HOME!

The notion of going home and finding solace is as old as man--even the cavemen were probably thrilled to put their clubs at the door, kiss the wife and settle in for a nice time by the fire. When home is the sanctuary it is a blessing. This is mom's fond memory. However, now, going home would never be what she remembered because it would involve full time aides to keep her safe. She would hate having a stranger in the house all the time "watching her" ( as she says). Yet, this is the reality that we face--she can be home and unhappy with the turn of events, while we scramble to piece together the right mix of kindly, affordable aides for just long enough to use up her assets and then move her back into a nursing facility; or pray that the daily barrage of "when am I getting out of here?" finally stops and she makes her peace with the nursing home as her abode. If her handling of her finances hadn't been the way it was, there might have been other options, but for now, until I win the big lottery, I cannot fix the series of events that were put in motion by poor choices and dementia.

I really want to be the daughter who lovingly visits and brings sunshine into my mom's life, particularly on Valentine's weekend, but I know that instead we will go head to head trying to explain something that she can never really understand. I wish a geriatrics professional could give the recipe for handling this, but to date, no one has the answer. They all just say to humor her. This is not working, and my ability to cope with it is suffering the consequences.

Mom-- I know you won't really believe it, but I love you and want the best for you. Home is not what you really want. What you really want is to be capable and independent again and this, my love is not today's reality. Happy Valentine's Day from your daughter.

Sadness Prevails

The inevitable has happened. Mom's lethargy was part of a urinary tract infection that led to a hospitalization, that led to needing the custodial care in a nursing home. The events of the last week have given me a crash course in medicine (primarily geriatrics)and a preliminary degree in social work as well as disdain for our health care system. The idea that a middle class person who worked hard all their life and paid taxes while following all the rules should need to be bankrupted in order to get the help they need in old age is appalling and completely unacceptable. For all of the people who fear universal health care coverage and believe that it's socialism, try placing your parent in a nursing facility in their old age and then come back to report how well our present system functions. It is ludicrous to think that I needed to spend an entire week on the telephone trying to sort out the care options and placement for her instead of being able to spend that time visiting and comforting her while she was ill and afraid. And, in the end, found out that after paying for medical insurance for years and years, there is still no coverage available for a middle class person who needs custodial care. So all that my poor father worked 72 hours a week for, over a 45 year work history needs to evaporate before any assistance becomes viable. In a word, it's disgusting!!!!

All of that being said, I also need to come to terms with seeing my dear, sweet, intelligent mother needing a security ankle bracelet in the nursing home because she's a "flight risk". I need to field the constant questions about when she'll be going home and continue to be creative in answering those ponderings without owning up to the reality to her, that she most probably needs to stay there for her own protection. Of course thousands of people my age are doing exactly what I've done this week. That's little comfort because right now, sadness prevails.

Anger vs. Sadness

I am all too frequently angry or sad these days. The anger stems from the endless phone calls that are required to answer the same questions over and over again and the unfortunate imbalance of my responsibility and involvement in my mother's care compared to that of my sibling. The sadness comes from the need to be so involved in the first place after becoming accustomed to a mother whose life was vital and independent.

Today is mostly an angry one. My mother is not feeling able to do anything--she may be reacting to new prescriptions or this is a new piece depressed piece of the dementia puzzle. I spent all day with her yesterday and hoped that my brother would be able to shoulder some of the responsibility of calling her doctor and taking her to an appointment if that is what the doctor suggests. Instead, he is STILL asking me to come there ( an hour trip each way) because he believes it would be better for two people to do this. No sh...!! It would be better so many days that I am the only caregiver to have more than one person involved, but I wind up doing everything alone. Now, when he has to be the only one, I am not free to just be me for the day, but need to be on call and will probably still wind up going there again! Of course I could stand my ground but that's where my feelings of devotion and responsibility won't permit that, and he knows it.

The prevailing sadness and disappointment that mom's life has come to this, and the problems inherent in the sibling relationship all are a heavy burden. I live this issue with her almost 24/7,( via all the phone calls, errands and countless visits) while my brother is still able to walk away from a lot of it for weeks of non-involvement and excuses about work taking too much of his time. He also doesn't help with our 86 year old uncle who depends upon ME from a nursing home. The sadness is shadowed by anger and vice versa throughout the day, but today the anger is winning!

Anticipation, not of the Carly Simon variety

Tomorrow I will be meeting with my mother and brother for an intervention of sorts. Everyone who knows my mother is convinced that she is in serious need of extra help in the house. She is alone for 18 hours each day and the most frightening part of it is that she cooks on a gas stove and takes a shower BY HERSELF! She always insists that she's fine with these parts of her life, but considering her failing eyesight and forgetfulness of increasing magnitude we are all convinced that these are ingredients in a recipe for disaster.

So, tomorrow my brother and I will try to sweeten this monumental change in our fiercely independent mother's life by making it sound like she probably could use a "visit" from someone a few times a week. In actuality, I believe that if only my brother would "visit" and really help out, this change in her life could be postponed, but I am going onto a tangent that probably needs another blog! So, herein lies the dilemma--how do we sugarcoat this talk? Our mother is not stupid, nor is she completely demented--she will completely understand what we're proposing.
She will know that this is yet another step in lost independence and she will probably get very angry. How do we manage to get her the help that she needs in order to be safe, without pulling the rug out from underneath her and take away her will to live?

I am convinced that we need to do this, I just pray for divine intervention in guiding me to be patient and strong. Somehow when I needed to have these traits as a mother or teacher, I found them easily accessible to me--there was always an inside voice that helped guide me through the process. I seek that voice now, but it often alludes me--being a parent to a parent is not for the weak!

Not the SAT

Okay, when I was a student, I almost always did really well on tests. Even when the teacher/ professor decided to give us a "pop quiz" I was ready. I always did my homework, paid attention in class, and generally was a goodie two shoes who teachers loved. My test results were generally no surprise, and I felt really confident that my results would correspond directly to both my understanding of the material and my hard work.

Today, though, I faced a test that I never took in school. It was the test of patience and forebearance-- I failed it badly. Not one to ever be satisfied with an "F", or even a "D" or "C", for that matter, I am now trying to understand what happened. The crux of the issue was based on a piece of mail that probably came to my mother at least 10 days ago regarding her eligibility for "Access-A-Ride"--the most important cog in her transportation puzzle. She needs to fulfill a few requirements such as a doctor's appointment, a passport picture and an evaluation by the city of New York in order to continue her ridership. We have discussed this many times and were awaiting the arrival of this important piece of mail.

Today, I found that the important mail had come at least 10 days ago, with an appointment set for this Tuesday with the city. The passport picture had not been taken, the doctor's paperwork was not accomplished and she would be unable to get to the appointment on the correct day.

Now, I know what you're thinking--why hasn't this daughter taken charge and made the appropriate appointments, had the pictures taken, etc.. You would be right, except, and, wait for it.... Mom INSISTED that she and her male friend need to do all of this, and that she would not want me intefering. So, I didn't interfere, but when I saw the letter from the City, I started asking the important questions. That's when I failed the test.

Mom became so angry that I hadn't taken care of everything, and that I was questioning her, that she began yelling at me, and poking me in the arm. She wanted me to understand that she has a medical problem--her eyes-- and can't do everything for herself. This is where I lost it!!
I have been begging her to accept some help in the house with paperwork and other things that I can't get to while living 50 miles away and she has consistently refused. But, today, she was screaming at me for not understanding that she needs help with such things. Something inside me just snapped-- I tried calming her down, but she wouldn't listen or stop her tirade--she wanted me to "fix" the problem and of course, today is a Saturday so I couldn't do anything.
I tried to explain that she had asked me not to interfere, but that fell on deaf ears and more yelling ensued. If I hadn't retreated to the bathroom things might have really gotten ugly.
We really resolved nothing, except taking the passport pictures and deferring a solution to the problem until the next business day, and her male friend's intervention.

So, I give myself an "F" in coping, and calming the dementia in my dear sweet, almost 85 year old mother. I neither fixed the problem nor had an easy time of the visit. I am encumbered by the problems of her need to remain independent, and her inability to do so. I know where this is leading--either insisting on 24 hour in house help, or committing her against her will to a nursing home. She really isn't rational a lot of the time, and she's dangerous to herself. Her fridge is full of molding food that she refuses to throw away. I had to quickly ditch spoiled things while she was busy somewhere else in order to save her from herself. Yet, I think there must be a more calming way to accomplish all of this. I am stymied by my own poor grade, and wish that next time I could study in the old fashioned way to get a better score.

The Perennial Catch-22

When we talk to lucid people we often forget that there are "rules of engagement". Those rules generally follow the pattern that previous conversations have been archived in our respective memories, and can be recalled when necessary for reference in new conversations. This, however, does not happen when we speak to a person with dementia.

There have been literally 50 discussions with Mom about changing the way she manages her finances. We ( the entire family) have encouraged those changes through the last 5 years, in order to protect Mom's assets ( meager as they are) if she should need nursing home care. My brother and I have also met with Mom and her attorney in order to advise her of her options. Today, the subject came up again, and the options were discussed. I assumed that there would be some glimmer of recollection from all the previous conversations. Never, never, never assume anything when you are speaking to someone with dementia!!!! Mom asked for the explanation of the options, and then proceeded to tell me that nobody ever explained this to her before, and that now she would need to think about the choices before anything could be done. This would sound reasonable if not for the fact that 5 minutes earlier, she had told us that she was just waiting for my brother and myself to tell her which day we wanted to take care of the finances!!

I am generally a very patient person--just ask my husband and people who have watched me teach--but patience, has it's limits. I do not know how to get past this Catch-22. Nothing will ever get done if every time we discuss this, or other important issues, Mom is believing that she's hearing it for the first time, when in actuality it's really the 10th or 50th time. We cannot move forward on any decision without her consent ( nor would we want to). We are trying to act in her best interests, and are completely stymied by the fact that every conversation with Mom is a new one. My patience is being tested every time I see my dear, sweet Mother. My heart is wrenched beyond its limits and there's no analgesic for this pain.

I'm 58 but I'm scolded like a child

There is a pervasive sadness that follows me these days. I am often worried about Mom's safety, but also fearful of a new side of her personality--she now scolds me more often than I was ever scolded as a child. Here is a perfect snapshot of one such encounter:
Mom needed a small order of groceries and would not meet the minimum requirements of Peapod. We located a small grocery store in her neighborhood that would accommodate her needs. She needed to establish an account with them for her credit card and she set out to do that while shopping there, with her male friend. She had also given me the shopping list before this outing.
When I found out that she was planning to go there herself, I was so proud of her ability to be independent again, that I threw away the list--thinking I wouldn't need it.

Well, that turned out to be a giant mistake! She went to the store with her friend, but only opened the credit account and bought NOTHING!!! Then she called and asked me to place the order. When I explained that I no longer had the list, I was shouted at and scolded as if I were 10 years old--in fact, she never yelled at me like this, when I WAS 10 YEARS OLD!

Herein lies the problem I face each day-- at one moment Mom is perfectly logical and reasonable. At other times, she is angry, beligerent and mean-spirited, telling me that I'm not helping enough or equal to the help her male friend receives from his family. Honestly, I'm not in competition with his family, but they're not helping more, he just needs less help!

I used to love calling to talk to my mother. Now I fear each phone encounter--for I walk into a landmine, not knowing which personality will be on the other end! This person embodied in my mother is not the same loving, rational woman I used to know, yet she is housed in my mother's body--I know this will only get worse with time, and yet Mom continues to insist that she is managing completely on her own and won't accept additional help. HELP!!!!