Questions

Rough day.

How much more decline can there really be?

What thoughts go through her head? Do thoughts go through her head?

How much longer does she have?

Will she rebound tomorrow?

When do I hire more trained help? How much can I do on my own?

Who, if anyone, does she recognize anymore?

What can I do to make her life better?

New Love

[I was reading back through my journal and ran across this entry. I thought it pertinent to this blog.]

7/11/2012

                “Stay in the house. I’m just walking out to get the garbage cans,” I explained, presumably, to two year old Matthew, but the statements subtly had a larger audience. “If you come out your feet will get dirty and the concrete is starting to get hot. And you don’t have shoes on,” I said as I walked out the front door. I looked back once to see if anyone was following me. No. They were still inside, but as I walked back up the driveway towards the house there were my little Matthew and my sweet mom both standing with fingertips on the glass door waiting for me to come back inside. As I looked at my sweet mother mirror the actions of my toddler, I felt the love that has grown in me since she moved into our home. It was slightly unsettling, in a good way, how similar that love felt to the love I have for my little dependent Matthew.  I say the love has grown because, to me, it is different from how I used to love my mom when I loved her as her daughter, a daughter of an independent, nurturing, intelligent, busy mother.  This kind of love—or perhaps a better word would be “relationship”—had to grow because it was not natural, at least not to me.  It was preceded by mourning and loss for the mother that I knew, by fear of who my mom was becoming and perhaps, by resentment that my long-time friend and confidant, my rock was no longer those things.  (It may seem strange to include “friend” as something that was lost, but it was, at least the friend I knew. I can’t maintain the same friendship when my mom does not even know who I am sometimes.) So a new love has grown, a love where I still feel blessed to have her in my life, a love that is a nurturing love that, as I said before, is unsettling in how similar it is to my love for my toddler with all of his toddler tendencies.

 It was not the first time that I appreciated the similarities between the two. This time it was their tendency to follow me wherever I go. They shadow me. They want to be where I am and watch what I am doing--And not, necessarily, from across the room.  Just like Matthew pulls on my leg or pushes a stool to insert himself into my tasks, Mom will sidle up next to me, right next to me, as I cut vegetables, fold laundry, read a book, or talk on the phone. I smiled, internally, one day when I laid down on the couch to read a book.  Within ten minutes, Mom was perched on top of my feet at the end of the couch and Matthew was trying to snuggle up beside me in a most un-relaxing way.

The first time that I remember watching them and realizing their behavioral similarities was about six weeks after Mom had moved in with us. I was helping her get ready for bed, and we went into the bathroom to brush teeth. I handed her the toothbrush, with tooth paste already applied and then started giving basic instructions including reminding her of what she was doing. On my other side was Matthew. I turned to him, loaded his toothbrush, and started to help him brush until he insisted on doing it himself. I stood looking the mirror watching my two charges and saw, perhaps, my first real glimpse of what I was facing.

Accepting our relationship change has not been psychologically easy for me, but acceptance has come. I smile, if not sometimes roll my eyes, when Matthew screams because Grandma has stolen his yogurt or is eating the food off his plate or when Mom is upset and trying to scold Matthew because he’s made a swipe at her food. I don’t, in fact, can’t treat her as I do Matthew, but I certainly have learned to accept and work with the reality that many of her actions reflect the self-centeredness and logic of a toddler. And I love her.

Finding Respite

Finding help so that I get time away, at first, was a tricky issue.  It still can be, in fact.  My first attempt at hiring someone to come into my home to watch my mom did not go well.  I went through a hospice agency and they were just not the right fit.  I had leads on a couple of CNAs that fell through as well.  Finally, I hired someone who would just come and spend time with my mom. She has no training and is not required to do anything like helping with the toilet or giving baths, but she is a sweet, loving woman who comes to spend time with my mom so that I can run errands, go to the park, or just get my morning shower.  As an added bonus, she loves my 3 year old, as well, and she will sometimes watch him, too.  She has been a great addition to our schedule.

For longer term respite, we found a facility that will take "respite patients" into their facility along with their full time patients. I've been very happy with this arrangement; it is what has allowed me to vacation with my family on occasion.  The first time we took my mom there, she was miserable because she thought she was being left forever.  I didn't use the facility again for a year. By the second stay, my mom had declined enough that it didn't really upset her. She just kind of does whatever she's told. If she were capable of processing the thought, I would say she was resigned to the life she has now.  She never seems very happy nor does she seem very sad.  She just exists.

I am not good at taking time for myself, but when I do, I feel the difference that it makes. I am a better mom, a better wife, a better daughter--a better me.Yesterday I used the time to play a game with my youngest and then met my high schooler for lunch and helped him study for a math test.

Besides giving me time, I also feel relief that someone is simply spending time with my mom that is focused on her. I am pulled in so many different directions that I often worry about my mom's quality of life.  This helps me to feel like I haven't just "planted" my mom in a place and left her too long. Yesterday I used the time to play a game with my youngest and then met my high schooler for lunch and helped him study for a math test.

Tough day

Today was tough.  I can analyze. I can observe. I can report. But there is no escaping the emotional wrings that come, some days--some moments--more intense than seem bearable. This morning was that kind of emotional wrench.

I walked into my mom's room just as I do every morning and said: Good Morning, Mom! Ready for a new day?

I got no response; not even a look. I finally got her attention and then had to force her to get up and get dressed. She was barely walking. I practically carried her into the bathroom. She didn't want to get undressed (that's typical). She was constipated and needed assistance with that. By the time I got her back in her chair ready for breakfast, tears were rolling down my cheeks and the banner of thought scrolling through my mind was: Where is my Mother? Why is she like This?

(And in the background was my three year old pulling on me, demanding to be played with.)

There are days when I have to ask "How long can I do this?"

Not Swallowing Food (occasionally)

I have read that this is a symptom that comes in the later stages of Alzheimer's. For my mom, it isn't that she can't swallow. It seems, rather, that she simply forgets that she has food in her mouth that needs to be swallowed. She will stop chewing, pocket the food in her cheek and hold it there; however, when I remind her that she has food in her mouth, she starts chewing again, and generally, she will swallow. The most effective way to remind her is not with words but by putting another spoon full to her mouth. She doesn't take the new food because she realizes there is something in her mouth.  Only a few times has she spit the food back out.

The first time I realized that she was pocketing food in her cheek, I worried. Now, it is just another one of the odd symptoms of the messed up circuitry in her brain.

Wheelchair: Kids loved It; Mom Detested It

As much as my mom detested our suggestions that she might benefit from the occasional use of a wheelchair or a walker, my kids loved having the medical equipment around. The contest for months was who could balance the longest on the back wheels of the wheel chair. My youngest child thought that taking a ride on the walker should be his right. But my mom treated the equipment as a concession to her declining health. We compromised for awhile by taking walks with an empty wheelchair. When her legs got tired, she gladly took respite in the chair.

After one particularly bad seizure, the one that put her in the hospital and then temporarily in a care center, she used the wheelchair often, even around the house. I had her use the wheelchair each week at church simply because her balance was precarious and her energy level unpredictable. After the third week, I was helping her out of the car with the chair waiting for her, and she said, "I am not using that." I put the wheelchair back in the trunk, and she walked into church. Taking medicine and using medical equipment were my mom's sticking points; she hated to be dependent on anything or anyone.

Some of the equipment we found most useful early on were handrails in the bathroom and a raised toilet seat. The walker was never great for us. First my mom refused to use it and then she just lost the mental ability to know how to manipulate it. ie. hold on and move it forward. Shower seat has been great.

Incontinence part 2: The Nitty Gritty

I tried to be discreet in order to maintain my mom's dignity. I felt that she wouldn't want other people to know that she wore briefs or needed help, so I quietly did my job being careful not to talk even too much to my mom about needing to wear briefs. (I learned to call them "briefs" at the care center. "Depends" of course, is a brand name so it doesn't always apply, and there was no way I could call them diapers especially when talking to my mom.) So you can understand my mortification when my three year old looked up at my mom and said, "Grandma, you stink. You need your diaper changed." How could I chastise him? He was right, and we had said it a million times to him. I glanced at my mom to see her reaction; I don't think it even registered. That is how far gone she is at this point.

Now the Nitty Gritty:

When I was bringing mom home from the care center, I asked the CNA how often I should be changing her. She said that a general rule of thumb was every four hours.  I found, however, that just like with a child it varies, and you sort of learn as you go.

I found that it was helpful to keep gloves, perineal cleaners, adult wipes and a barrier cream next to the toilet. The skin can be tender and the cleaning and barrier creams really help.

There are tons of different briefs. I tried several to find what worked best for us. Some of your choice will depend on if accidents are occasional or regular. Also, how do you put them on: lying in a bed, standing or sitting?


This aspect of care taking, as I said before, is huge. For me, it was terribly uncomfortable, at first. As the disease progresses the task grows in magnitude and becomes one of the the more time consuming parts of care giving.  My three year old summed it up when he said, "Mom's [job] is to make it so Grandma doesn't stink." It is not a glamorous job.

Incontinence Part 1: Talking about It

It's an issue no one really wants to talk about. Certainly, no one wishes their loved one to face incontinence issues and no one wants to deal with them.  In fact, I'm guessing that most people who dare click on this post are those who are facing the daunting task of dealing with the caretaker side of incontinence and all the appendages that go with it. And to you people who are there, you don't hesitate reading this at all because quite honestly, as my mother lost her ability to "stay dry", my job grew significantly, and I welcomed tips and suggestions on how to deal with things.

First of all, if my mom weren't suffering from Alzheimer's, I am guessing that this would be a different conversation. If her brain were working, it would not have been left to me to explain that she had a problem that needed to be dealt with. The road to incontinence, in our case, was gradual.  The first issue was that she was not cleaning herself well after going to the bathroom.  How in the world do you say, "Mom, I think you aren't wiping adequately?" and worse yet saying, "Mom, do you need help?" Aaauugghh!!! That was awkward and didn't go well. She was indignant and declared she was capable of taking care of things herself. And I didn't push it because quite honestly, it was not something I wanted to be doing either.  I re-think how that could have been handled better and I still don't know how I could of done it differently.  We continued in status-quo, and I would just sometimes pull her aside and tell her that I could smell something then she would, occasionally, let me help her change.  She didn't need briefs (Depends) at this point at least not often. Only on a rare occasion would she have an accident.

We then had a unexpected shift. My mom had a seizure, the first seizure she's had in her life.  The seizure was bad enough to put her in a hospital and then into a rest home for 6 weeks.  While she was there, she was kept in briefs and was assisted with "toileting".  When I brought her home, we just maintained the routine that had been established. She was relearning to walk, so I had to help her anyway.  That was almost 2 years ago. Although our routine was established at that point, she still, often, expresses dismay that I am helping her with such a private issue.

My Children losing their Grandmother to Alzheimer's

There have been moments that scream louder than others that I am losing my mother and that my children are losing their grandmother.

Since my mom started to lose her speech early on in the disease, we often didn't know exactly what she was thinking. Shortly after my mom moved in with us, she looked at my second son and asked, "Now who are your parents? Where do you live?"  It floored all of us. Despite the decline that we had already witnessed, none of even questioned whether or not she knew who we were.Certainly, she hadn't gone that far, yet.  Although it shocked all of us, I think that it bothered my son that he was the one that she couldn't remember. It eventually moved to my third son, as well, and then to me.

Each of my children dealt with her differently.  My oldest, who happened to be the one that she remembered the longest, stopped engaging her much at all.  He had the most memories to lose, perhaps.  He had mowed her lawn for a couple of years. She had given him oboe lessons. He remembered her hiking and being active. Because he simply disengaged, I didn't realize the loss he was experiencing. I only clued in after reading an essay that he wrote about "something that was difficult in his life."  He candidly wrote about how hard it was to have his grandma move into our home and witness her decline.

My second son, the one that she forgot first, was gentle with her and made an effort to acknowledge her and to stop and talk to her.  One day I told him that it was a gift that he could still find ways to interact with her; some people are paralyzed into inaction when it comes to dealing with people in that kind of situation. He said, "Mom, it's hard for me, too. But I just make myself do it."

Son number three just didn't know what to say or do with her. Eventually, he has learned just to smile and nod his head. He is good about saying "hello" to her when he walks into the room.  He seems the least bothered by the situation. I wonder what he would say...I'll ask him.

My daughter who remembered fun play dates at Grandma's house became scared of my mom. It took a little training and coaching to help her feel comfortable around my mom. Now, (she's almost 9) after actively setting a goal to give Grandma a hug once a day, she likes to walk into the room and hug Grandma because it makes her smile. But the learning process is ongoing. Today, my daughter asked me, "Is it normal for Grandma to hold onto to my arm and not let go when I give her a hug." So a conversation opened up about how Grandma can't always control what her hands are doing.

And then there is my baby--currently, three years old.  He really doesn't know Grandma any other way.  He plays with her. He laughs with her. He fights with her. She is simply a part of his life. He is definitely the most comfortable around her--blessings of youth.

Am I Doing Enough?

It's the question that I constantly ask as a mother. It's the question that I ask as a wife. It's the question that I ask as a daughter. Am I doing enough?

Last night, my three year old laid on the floor outside my mother's bathroom door and threw a tantrum. "No, don't take grandma to the bathroom. Don't get grandma ready for bed. I need you to hold me." Tears streamed down his cheeks. In my head, I knew that he had been held many times that day. In my head, I knew that his dad was just upstairs and could easily be the holder. In my head, I knew that it was a tantrum. But my heart yearned to pick him up and wipe his overtired tears away and lull him to sleep. And that's what would have happened 15 minutes later, if he hadn't fallen asleep waiting.

My mom generally sits in one of two chairs throughout the day. She only moves out of them when I move her. She spends much of the day alone. I get her up. I feed her. I keep her clean and safe. But so much of the day she sits while I am attending to lives that are on a constant move. I feel guilt about not spending more time with her, yet I remind myself that she barely acknowledges me when I am in the room with her. I feel like I should get her out more, but in our hot desert climate, we have to be out by 7 a.m. to beat the heat. That isn't going to happen. I guess I'll put off strolls in the park until the weather in more cooperative. In my head, I know I am meeting her needs. In my heart, I yearn to give her more quality of life. In my head, I know that she doesn't interact much with people even when they are present. In my heart, I want her to feel companionship; I don't want her to be alone. Am I doing enough? I hope so.

My husband needs time--time with me. He is patient. He is easy to put last in line. After all, he isn't lying on the floor outside the bathroom door throwing a tantrum. He can feed himself and clean himself. In my heart and mind, I know this one needs more time...that's why I asked him out on a date tonight. :)

Medical Directives

If we did one thing right, it was talking to my mom about her wishes regarding end of life medical care. She was very clear about her desires. HOWEVER, that being said, it is not easy to call the shots when it comes to end of life decisions. In our case, my mom had made it clear before the Alzheimer's was ever evident that she did not want us to go to extremes to preserve her life if she had brain damage. She didn't want her life preserved if she were going to be in a severely impaired mental state.  That is easy to say when you are considering something like a car accident that leaves you in a vegetative state in a hospital room sustained by life support machines. Declining mental abilities is a different, difficult to define beast. How far down the Alzheimer road do you go before you reach "severely impaired"? What is "letting a person go" and what is euthanasia?

Along the road to end stage Alzheimer's, there are stages where people are still leading semi-productive, happy lives.

http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

The first time that we addressed very specific questions regarding my mom's medical care was after a seizure that put her in the hospital. After 24 hours of her being minimally responsive, the palliative care nurse came to talk to us about how we wished to proceed. The questions were more than the simple "DNR" that you hear about. Some of the questions were:

• Do you want CPR given
• Do you want antibiotics given
• Do you want IVs given
• Do you want a feeding tube

The antibiotics question was particularly difficult for me. I knew that people, in the end, are often taken out by pneumonia even though it can be treated with an antibiotic. But a UTI can also eventually take someone out, as well, and it certainly can be easily treated with an antibiotic. Why was it easier for me to accept pneumonia than something else? It became a time of soul searching and value questioning. It was a time of answering very personal questions.

In addition to assuaging my own concerns, I was also very conscious of making sure that my siblings were on board with the decisions. Even though it wasn't necessary legally to have everyone concur with the directive I was going to sign, I wanted to be in agreement with my siblings. After all, our relationships would continue after Mom's death, and I felt harmony in the end of life decisions would lead to harmony after Mom's death.

My mom recovered, somewhat, from the seizure, and as Alzheimer's has taken her from us more and more some of the angst involved in end of life decisions has lessened, but the burden of making those decisions remains. You are making those decisions for someone you love, and despite my mom being a shell of the person she was, she is still my mom. Watching this mean disease hurts. Contemplating her death hurts, too.

Two year old And Seventy-seven year old

Fall 2011: My youngest was barely two; my oldest was just shy of seventy-eight. That was when we moved Mom into our home. Experiencing daily life with my mom amazed me--in a sad way--but amazed me nonetheless.

Initially, I felt like my mom was above my baby in her ability to reason, in her motor skills and even in her speech, but not by much. I was amazed at some of the similarities they had in their behavior. Sometimes she would take food off of his plate, and he would scream. Then she would shush him and say "no, no" because she didn't like the scream. I found myself mediating between my mother and my two year old. It was a bizarre feeling to be explaining to my mother that my toddler was upset because she had taken his food. Sometimes I'd even take the food from her, return it to him, and go get her something instead. She would shake her head as if I were the crazy one.

Mom at my 2 year old's birthday party

Two years later, it has been amazing watching their abilities become more and more equivalent and then, eventually, watching his surpass hers. In my mind, I see it as a graph. My mom's line descending over time and my son's line ascending. At about 2 1/2 years old his line intersects with my mom's. At that point, his cognitive and motor skills begin to exceed my mother's.

Several years ago, I watched a movie, The Curious Case of Benjamin Button. The premise of the movie is that a man is born old and gets younger over time rather than older. At the time, the movie was amusing, but I have thought about it much more as I've watched my mom age and battle dementia. There is a disheartening similarity of the bell curve that could represent our cognitive and motor abilities throughout our lives. It makes me want to seize the day while I'm at the high point on the curve. I guess that played a part in the "mid-life crisis" that I started on my 41st birthday.  That is fodder for another post.

To Drive or Not To Drive

Clues that perhaps driving should be taken off the table

• You keep getting lost going to your daughters' homes that you have been to hundreds of times
• You not only leave your car keys in the ignition, but you leave the car running in the grocery store or church parking lots
• You back into your daughter's car and then can't figure out how to take the car out of reverse and put it into drive

Those were the big clues that my mom shouldn't be driving.  I know. Don't laugh. You would think that we would clue in earlier, but it is amazing how difficult it is to say to a parent that it is time to stop driving. It is such an affront to their independence. The last item on the list was when I finally called my siblings and said, "She can't drive anymore."  We were fortunate that she lost her keys the next day and no one ever found them. We made sure that the spares remained "lost" as well. However, I did talk to her about not driving anymore and for several months after that, she was upset at me for taking away her ability to drive. She would shake her finger at me which, so far, is the most physical she ever gets in expressing her frustration.

I was at a stop light once with Mom in the passenger seat when I got rear-ended by an older woman. It was a gentle bump, but the woman put the car in reverse and then into drive and promptly rear-ended me again. I hopped out of the car and went to look at the damage. She backed up again, and while I was standing between her car and mine looking at the damage, she came rolling forward for a third bump. Fortunately, my son yelled at me to get out of the way. The woman could not figure out how to put her car into park.  She just kept oscillating between "drive" and "reverse"--how familiar did that sound? When I was talking to the policeman explaining that she clearly should not be driving, he patiently explained to me that, although he agreed, they couldn't take her keys away. She was not driving under the influence and the accident wasn't serious enough to do more than a citation. I was so grateful my mom wasn't still driving. The humorous part of the story (humorous now) was that my mom who was sitting in the car was irate, not because I had been hit, but because they would allow a woman like that to drive and they still wouldn't let her drive. My son said to her, "Grandma, they won't let me drive either" (he was 14) and she said, "What did they get you for?"

We probably should have taken her keys sooner. We were fortunate that there was never a serious accident especially with her driving that big, powerful Buick.

Two Homes

My mom living in her own home presented a challenge between balancing maintenance of her home and her needs with maintaining my own home and the needs of my children and husband. Of course, this isn't unique to having two residences; that challenge has remained constant regardless of where my mom was living. However, I found myself stretched between the two.

During the school year, I would make going to grandma's a "play day" for my daughter. She could play at grandma's while I worked on paying bills and sorting mail.  But I made an awful lot of mistakes during this period of decline, probably because I didn't grasp or I was in denial about what was happening to my mom.

Some things that I wish I would have done differently are:

• I wish I would have hired yard maintenance rather than trying to keep up on it as well as my own
• I wish I would have hired "meals on wheels" to bring in a few healthy meals a week. I did not realize how poor her nutrition had become until a couple months before removing her from her home.
• I wish I had hired someone to help clean her home occasionally.
• I wish that I had helped her record or write her personal history before it became inaccessible in her mind

I realize that not everyone has the means to hire help, but in my mom's case, she could have hired at least some of this help, and it would have helped me to meet the needs of my family and my mom better. 

I involved my children in cleaning and yard care which was a good way for them to serve their grandmother, but I also spent many hours away from them depending on the older kids to watch the younger or depending on my husband to put kids to bed while I helped my mom. There are good lessons learned, but there were also times that my children sacrificed as my time was split. There was no perfect solution and I did the best I could.

My mom was fortunate to have attentive neighbors who would occasionally call if something were off. I will always be grateful for the love and care they showed her.

Mom versus Technology

Mom was determined to learn how to use Quicken, e-mail, and a digital photo organizer, and she wanted me to teach her. I didn't understand at that time what was happening inside my mom's head, so I spent hours and hours and hours and hours trying to help her learn how to use these programs, after all, Mom was certainly an intelligent woman and none of these programs were really that complicated--especially basic e-mail. I would come home and look at my husband and be absolutely incredulous that she could not remember how to open an e-mail. We often chuckled at how many times I had helped her go through the different processes, but there were also times that I wanted to pull my hair out after spending hours balancing her check book using Quicken when I could have done it in 10 minutes. It was such a challenge not to offend by taking over and yet not spend endless hours accomplishing simple tasks.

In hind sight, the clues to her diminishing mental abilities are obvious; however, at the time, we just thought she had a strange inability to understand technology. I mean, she never had mastered the VCR or answering machine. This really wasn't that different--but it was.

She would call completely frustrated with the t.v. or satellite company because the channel wouldn't change, and I would talk her through the process over and over again. "Is your remote on 't.v.' or 'satellite'?"  "Is the channel on your t.v. on 3? No--the t.v. not the satellite." "OK, mom, push on. What is showing on your t.v.?" and finally, "Mom, I can be there in 30 minutes. I'll come check it." And after ten seconds, the t.v. was "fixed" and my mom was gushing about how "wonderful" I was.  (Repeat every couple of weeks.)

Aricept: the first try with meds

Aside from vitamins, my mother has few medications and has never taken any medications on a regular basis, simply because of her good health. Although she has always believed that medicine can be helpful, she also saw medicine as something that other people need--not her.  So after our first meeting with the neurologist, where he suggested she begin taking Aricept, she could not grasp that taking this medicine was going to be a long-term, most likely, a lifetime regimen. She wanted a pill that she could take and be cured. Admittedly, the Alzheimer's was already starting to play with her ability to reason, so just getting her to regularly take the medicine was challenging, but we made it through the first three months on the beginning dosage.

After 3 months on 5 mg of Aricept, she felt that she was making progress. I didn't see it, and I made the colossal mistake of sharing my feelings with her and the doctor at her follow up appointment. He said that he actually didn't expect to see much change as that dosage is usually just a starter to see if she could tolerate the medicine and that we would next move to 10 mg. It seemed like a logical step, and I was pleased to start moving forward, but I did not realize at that time how profoundly my observation of non-progress affected my mom. From that time forward she became difficult about taking her medication citing that I didn't think it was making a difference anyway.

The final straw that did us in was one more change in the dosage.  For a few months, the FDA approved the dosage of Aricept to go up to 15 mg. This happened just as my mom was experimenting with the drug. She was tolerating 10 mg well, so we figured "why not try the 15 mg?" Her body did not tolerate it well. She had bowel problems and it made her so uneasy going out of the house that she gave up the medicine all together. Again, because her logic was beginning to be impaired, she couldn't accept that this could be a result of the dosage change. She simply gave up Aricept all together. We couldn't get her to give it another try at any dosage.

Diagnosing the Alzheimers

My mother was in her early 70's when she started expressing distress over forgetting words. Her children attributed the few lost words or forgotten names to the normal aging process. Mom was living on her own, driving, serving in her church and still was more help to us than, perhaps, we were to her. She was a "doer" and though quiet and gentle, a strong force in many lives.

By age 75, she worried enough to start pushing to see a neurologist, so I took her in for testing. She did really well on the initial memory test. It was just a series of fairly simple questions and she did well enough that the doctor didn't seem overly concerned. He ordered blood tests and a CAT scan just in case there was some other physiological reason for the the forgetfulness. My mom actually hoped she had a brain tumor that could just be surgically removed. What she was saying is that she wanted a definable and solvable affliction as opposed to the ugly, ambiguous, unstoppable Alzheimer's disease.

Her doctor also suggested that she start taking Aricept, a drug that has been somewhat successful in slowing the progression of the disease. He explained that they start on a low dosage and if she tolerated it well they would increase the dosage. Meanwhile we would get the tests done and see what could be done. The blood tests came back normal. The CAT scan showed some abnormalities in the brain, but nothing definitive or significant. The notes from the radiologist mentioned the abnormalities but said they could be results of normal aging. My mom was disappointed that there was nothing obviously wrong.

She started taking the medicine. I'll write about that in another post.

About a year later, as my mom insisted that she was getting worse (and I concurring), the doctor ordered a PET scan and a session with a neuro-psychiatrist. The PET scan was read as showing "symptoms that are consistent with Alzheimer's." The neuro-psychiatrist confirmed that there was some forgetfulness but said she was not significantly progressed. I was unimpressed with his observations. It certainly seemed to me that a lot more was going on than he assessed.

And then things started to go down hill fast.

Joining the Sandwich Generation

My mother has Alzheimer's--or dementia--no doctor has definitely diagnosed her with Alzheimer's since the only definitive diagnosis comes from an autopsy. The closest diagnosis we were given was "patient has symptoms consistent with Alzheimer's" following MRI and PET scans. That is okay with me, though. As far as I have discovered, the symptoms vary regardless of which disease is responsible, and the treatments are generally the same. At least, this has been the case with my mother.

I am hoping the things that I write in this blog can be helpful to other people who are facing this disease. There is plenty of information out there about Alzheimer's and care giving. I am in no way unique, except that I am. Every person facing this intense and challenging part of life is living in their own unique situation, and I feel for you.

When my mother was still living on her own but starting to need help a little help with managing bills, I was just pregnant with my last child. By the time he was 2 years old, we had moved Mom into my home, and she was needing help with many daily activities.

And there I was...a member of the sandwich generation. I was sandwiched between children ranging in ages 1 thru 15 all needing individual attention and a mother needing more and more care. The balancing act began.