All That Remains is Love

Mom copyIn her condolence note, a friend reminded me of my blogs talking about my mother’s dementia and my struggles managing her care and her life.
Reading through my blogs of a year or two ago, I revisit our struggles. How angry she became when she could not keep her dog or her jewelry in assisted living. How sad she became when she repeatedly told me that she wanted to go home, even though she was in the condominium where she had lived for sixteen years.

I revisit how terrible I felt about moving her to the full-care facility. The social worker told me that other residents had been complaining because Mom did certain anti-social things such as lying on the couches of the living room during cocktail hour. Complaints accelerated when she was cursed with horrific gastrointestinal distress. Because her bouts came on so suddenly, she would rush to use the toilet in other residents’ rooms. This was an invasion of privacy that continued for many months until the facility insisted she had to leave.

I hated to put her in that wing where my father had suffered and died. I could barely force myself to walk in there.

We resorted to loving lies. The patient-care specialist instructed me to take Mom out to lunch. During that time, the staff moved her belongings to the new room to make it look familiar. Feeling like Brutus, I brought her back. Mom immediately said, “Why are you taking me here? This is not where I live.” The specialist said, “You are just staying here temporarily. Your room has been flooded with stinky sewer water. It needs to be cleaned up.”

I knew this was the beginning of the end. I was so sad. Yet, I soon realized this was the best place for Mom. Her condition had deteriorated to the point where she needed the constant attention of the full-care aides who were like angels.

Despite all her infirmities, my mother always smiled and expressed her appreciation to the staff and to me. Despite the profound grief of watching my mother slip away, we shared many beautiful moments. When everything is stripped away – home, clothing, activities, even the ability to walk and feed oneself, all that remains is love.

I recall Lori’s Lesson: “Be grateful for every gift.”

Loving Lies

Mom, Mimi and Me copy

Life is so wonderful. I have been caring for my mother who has dementia. I posted a blog about a conflict she and I were having. She wants her jewelry but her assisted living facility will not allow it on the premises. I received two wonderful and thoughtful replies. I needed help, and my friends gave it to me. I am so grateful. I am going to print their letters in their entirety as well as lesson fifteen from Lori’s Lessons.

 

Lesson 15: Accepting help is not a sign of weakness but of strength. It takes strength to accept your limitations and to allow someone to assist you. To ask for and receive help requires the powerful combination of humility and courage.

 

Letter one:

I read your poignant post regarding your Mom ON FB.  My Mom too had AD until she passed away in 2007.  I’ve also had many patients with it.  [My friend is a neurologist.] Your comment “hate the disease, love the patient” was so right on.  Even later in the disease, when Mom could barely talk, our psychic emotional bond was such that we just enjoyed sitting together very peacefully.  However, there is a point when even that level of communication is gone and you realize you are just looking at an empty shell………………..

 

There are so many phases to this disease – good and bad – but no matter how awful they are, they all pass.  As an example, the very peaceful phase with my Mom described above was late in her course.  Early AD sufferers may go through a very unpleasant paranoid spell which sounds like your Mom’s present state.  She may believe you are stealing from her, attacking her (my Mom would only let me give her IM sedation in the hospital), that her husband is an imposter, that you are deserting her (“Don’t leave me here,” which is the worst), etc.

 

BUT one way to deal with it  – for her well-being as well as yours  – is to lie.  That sounds horrible and harsh but it is an important act of kindness.  It may be the only way to make her memory loss work in your favor.  You have to be creative.  With her jewelry you could say something like, “Don’t you remember going over to my house with me last night and putting it in the ____ for safe keeping?  If you want it back, I can bring it back tomorrow.”  Hopefully she won’t remember tomorrow, but if she does you could say YOU forgot!

 

You may be able to get away with this for several days because she may not remember the previous day’s discussion.  It is not mean or evil:  it may give her a great deal of solace and peace of mind.

 

The subject may change.  Like, “Where is so-and-so?”  “He just left but is coming back.”  You have to be creative and judge what she’ll accept.  Remember:  this is just another phase that will eventually pass.

 

You may also work with a phenomenon called “confabulation” which occurs in any type of dementia.  At some level the individual may want to “save face” and not admit that she’s forgotten something. For example, to demonstrate the profundity of someone’s dementia – who seemed superficially intact – to students on hospital rounds, I might say to the patient, “How did you like that movie we went to last night?  Wasn’t it great?”  The patient – who never left the hospital – may agree and maybe even elaborate on the subject.

 

No one likes to be untruthful or “play games” with a loved one but, remember, she is probably not understanding the content of the discussion – like “your jewelry is safe” – but she will relate to the associated emotion – in your face, your tone, etc.  Try to keep it upbeat and happy no matter you are telling and she’ll feel much better.  (And so will you.)  No matter how hard you try, you can’t MAKE her understand, but you can convey that everything is ok.  You can make her happy even if things are grim.

 

My Dad died of prostate cancer in the same nursing home 3 months before my mother died.  Mom was mute and incapable of any communication at that point.  I did not think she could comprehend the fact of his death.  But I did believe that if I told her I would somehow convey terrible emotions and she would be upset without knowing why.  It was an excruciating decision not to tell her.

 

These are my insights I offer you.  These were my coping mechanisms.  You’ll find your own but I hope this helps.  This is so very personal.  I am an only child who had 2 dying parents – who I loved beyond love – in the same nursing home at the same time.

 

Letter two:

 

Carol, I am so sorry for you and your whole family. My mother passed away in April from this horrible disease that slowly takes your loved one away. I’d like to pass along something that someone shared with me … Along the way I felt awful about not being truthful with her … Like having to leave her for the night and she would want to come with me but I would tell her I would be right back.

 

As I walked out of her room one night a nurse saw me bawling my eyes out as I walked down the hall. She asked me what was wrong and I said I felt awful lying to my mother so much lately to get her to do things. I felt like I was lying like it was my job. She said to not worry, that it was OK because we call them “Loving Lies”.

 

At that moment I felt a sense of relief and very grateful that she passed that on to me. It helped my whole family be able to not feel so awful lying and having to trick her into things.

 

We laughed a lot too and when she would get agitated I always told she was so funny and that she could have ice cream or popcorn to get her to do things she wouldn’t do.

 

Even after I got her into the shower by bribing her, she wouldn’t remember afterwards about the ice cream. I would give her the ice cream anyway and she would just beam like a little girl.

 

Take care of yourself Carol … I know you’ve heard that a million times but it is not only emotionally and physically exhausting it is mentally exhausting trying to keep things for them as calm and peaceful as possible.

Love my mother, hate her dementia

My mother has dementia and part of her condition is that she obsesses about things. Lately she has been obsessing about her jewelry. Because her assisted living facility has a policy preventing guests with dementia from keeping valuable jewelry in their rooms, I put my mother’s jewelry in a bank safe. In a rational moment, she thought this was a good idea. Now, however, she wants it in her room and says she doesn’t care if it gets lost or stolen. She called and left an angry message saying she didn’t want to see me if I didn’t bring it to her.

I know this is just her dementia talking. She used to have such good judgment. She obsesses about other things too. She called a friend about a ride to bridge three or four times and me just as often. But it didn’t hurt my feelings when she was worried about her ride: she wasn’t angry at me over the ride.

??????????????????????????????????????????????????????????????????????????????????I spend so much of my time taking care of my mother that I have become the boss in her eyes. She knows I am in charge of her life now, and she doesn’t like it much. (Neither do I but who is going to tell her that.) When she gets angry over her loss of control, she lashes out, sometimes at me.

It really hurts. I need to separate myself for a few days when she does this because I feel sorry for myself and that can translate into lashing out right back at her. I do a little self talk where I remind myself that this is her disease talking, not my mother.   I get some exercise. Eat some chocolate. Remind myself how loving and appreciative she can be. Reread Lori’s Lessons. Whatever it takes to get my equilibrium back.

Lesson number 20 resonates with me now. The biggest challenge for your caregiver is: to hate the disease, really loathe it, but not resent the person who has it. He or she may know intellectually that it is not your fault, but every caregiver has moments of thinking: “Why me? What did I do to deserve this?” They have to set that aside and move on, for themselves as much as for you. Still, to underestimate the challenge of dealing with their emotions would be not only naïve but potentially destructive.

 

 

Being a Parent to Your Parent

Last night we took my mother to the baseball game. She loves the Cardinals. When she met my father, she impressed him because she knew all the batting averages of all the players in the National League. We have had the date for a month and talked about it with glee.

Although she gets around pretty well, I put her in a wheel chair for the walk from the parking lot to our seats. She is very proud and hates the wheel chair but relented in the face of the long walk. The skies were looking ominous at this point, and Mom told me, “I’ll cry if the game is cancelled.” A thunderstorm ensued but passed quickly, quickly enough for the game to start an hour late. An 8:15 opening pitch is very late for my mother. Although she used to be a party girl, she goes to bed shortly after dinner in her 93rd year.

The Cardinals took the lead, and then the Red Sox tied the game. Mom was looking tired. I asked if she wanted to leavecardinals. She admitted she was tired but insisted on staying. The clock struck ten, the Red Sox got another run and Mom dissolved. Like an over-tired three-year-old, she started crying. She told me she wants her dog back. (The doctor says it is unsafe for the dog to live with her because of her Alzheimer’s so I am bringing the dog to visit on a regular basis.) It is so sad.

Today I returned home to an angry message from my mother. “If you don’t give my dog back, I am never going to speak to you again. He is my dog.” I called the retirement home and was advised not to bring the dog to her today. As with a child, she should not be rewarded for bad behavior. I am trying to help her visit her dog, but she sees me as keeping her dog away from her.

It is so difficult to be the parent to my parent. I have to be strong. Sometimes I don’t know where to turn. Sometimes I feel sorry for myself. I reread Lori’s Lesson number seven for caregivers: The biggest challenge for your caregiver is: to hate the disease, really loathe it, but not resent the person who has it. He or she may know intellectually that it is not your fault, but every caregiver has moments of thinking: “Why me? What did I do to deserve this?” They have to set that aside and move on, for themselves as much as for you. Still, to underestimate the challenge of dealing with their emotions would be not only naïve but potentially destructive.

 

 

Taking a good attitude about cognitive “deficits”

I recently read an article in the April 28 New Yorker by Michael Kinsley who was diagnosed with Parkinson’s twenty years ago and is beginning to evidence some cognitive “deficits” as, he says, neurologists “put it tactfully.” The article treats a very unfunny subject – the onset of dementia in Parkinson’s patients – in a manner that ranges from witty to laugh-out-loud funny. My favorite example of the later is a discussion of famous people with Parkinson’s, including Hitler, Franco, Mao Zedong, Michael J. Fox and Thomas Hobbes (the author of Leviathan who said life is “poor, nasty, brutish and short.”) Kinsley writes: “Is it just a coincidence, I ask you, that both Hitler and Franco were nasty, brutish and short? Chairman Mao was five feet eleven. Michael J. Fox is neither nasty or brutish but he is undeniably short.”

Because dementia is associated with the later stages of Parkinson’s, Kinsley decided to take a cognitive assessment test that he had taken twice before, once right after his diagnosis and then again eight years ago. “My motive was part scientific inquiry, party hypochondria, and part the journalist’s reaction to any interesting development – this will make a great piece.” The test showed a decline in executive functioning. The doctor told him it is exactly the decline that would be expected in people in their sixties who received the diagnosis in their forties. Kinsley remarks, “Although doctors are devoting their lives to helping people get better, they seem to find a strange satisfaction in seeing a disease take its expected course.”

One of Kinsley’s most interesting observations comes right at the beginning of the article. “You are the person least qualified to be writing about changes in your own brain, since you need your brain to comprehend these changes. It’s like trying to fix a hammer by using the hammer you’re trying to fix.” A happy insight for me caring for a mother with Alzheimer’s. I think her disease is protecting her from realizing how much she has slipped mentally. Like Kinsley and Lori, her attitude is good.

New Yorker  crop

Research Shows Being Bilingual Forestalls Alzheimer’s

This week I had a wonderful almost-surprise visit from a friend named Sandy Disner who is a professor of linguistics at USC. On the way to the airport we started talking about language acquisition in children. Just as we reached the drop-off point, Sandy told me that research shows being bilingual forestalls Alzheimer’s four years. With my family history – a father who had Alzheimer’s and a mother with dementia, I got really interested and texted her later to find out the name of the researcher.

Canadian neuroscientist Ellen Bialystock used MRIs to study older, bilingual adults in various stages of Alzheimer’s. In an article in the Manchester Guardian Alzheimer'sBialystock reports, “We did a study at the Baycrest geriatric centre in Toronto in which we identified 200 clear cases of Alzheimer’s disease and looked at the patients’ backgrounds to see if they were mono- or bilingual. Then we looked at how old they were when the family noticed something was wrong and when they were formally diagnosed. In both cases the bilinguals were significantly older, by about four years.” She goes on to say, “We did a second study with 20 monolinguals and 20 bilinguals, all about 75 years old. They had all been diagnosed with Alzheimer’s, and they were at exactly the same cognitive level, so you would expect them to have the same level of damage in the medial-temporal cortex. But when we looked at their brains, we found that the bilinguals had significantly more damage than the monolinguals. They had more advanced Alzheimer’s but they were functioning at the same level. That’s the advantage: they could cope with the disease better.”

Not all of us have the opportunity to be bilingual, but Bialystock goes on to say that this research suggests that learning a language late in life is probably beneficial “not because of bilingualism but because learning a language is a stimulating mental activity and a good way to exercise your brain.”

It is exciting to learn that there are things you can do to slow the process of dementia taking over your brain. Lori Patin knows this intuitively and is fighting back. Parkinson’s can cause dementia as the disease progresses, but she is doing everything she can to prevent that from happening. While she exercises her body four hours a day, she also does regular brain workouts. She plays bridge twice a week because this card game requires you to remember all the cards that are played. Just as she strengthens her muscle by lifting weights, she improves her mental capacity by playing bridge and other games that require memorization.

Mind Games and Food for Thought

 

My father died form Alzheimer’s and now my mother has dementia. With this genetic inheritance, I read everything I can about taking care of your memory. Yesterday I posted a list of foods that improve memory: salad oil, fish, dark-green-leafy vegetables, avocados, sunflower seeds, peanuts, red wine, berries, and whole grains. I was mildly shocked because I eat all these foods except sunflower seeds as much as I can because I like them. Better double down on sunflower seeds.

I also do Sudoko every day. Research says Sudoko and crossword puzzles make new memory connections. “My guess is that playing them activates synapses in the whole brain, including the memory areas,” says Marcel Danesi, PhD, author of Extreme Brain Workout. Whereas scientists used to believe brain development was static after a certain age, they now recognize neuroplasticity –  the brain can develop new pathways. Games and memory exercises encourage neuroplasticity.

Lori is well aware that Parkinson’s can lead to memory problems so she exercises her brain just as she does her body. She says, “To exercise my memory I play bridge twice a week for three hours at a time. And that has helped a lot because there is so much memory in the game. When I was in the hospital, someone brought me Suduko, a game of number patterns. That’s good for your memory too. I do more reading than I used to, which also helps me with words I can’t come up with. I went to a store called Marbles that sells games, mental exercises and other tools for your mind. I bought a memory game that is about an art auction where different things are auctioned off and they are all pre priced.   You have to remember what the pre price was and what the final auction price was. All of these may not protect my ability to function intellectually, but they surely seem to help. And, you know what? They’re fun. I’ve learned that if I can make mental exercises fun, I’m far more likely to do them.”