It was three years ago that my siblings and I were beginning to have the conversation about how long Mom could remain on her own. In three months, we will have the third anniversary of her moving into our home. In some ways it has gone quickly--everything seems to go quickly anymore. My youngest was not quite two. My oldest didn't even have a driver's license. Now my oldest has finished his first year of college, and my youngest is getting ready for preschool.

As the children have changed so has my mom.

I've felt that we have handled things pretty well and even have fallen into a pretty workable routine. I know that the situation hasn't been easy on my husband. I am realizing more and more, however, the mental toll that it has taken on him and the stress that has been placed on our marriage.

Be careful is my warning. Be aware of even the subtle changes and stresses that being a full time caregiver has on everyone in the family. I try not to require very much from others in my family as far as the daily care of my mom, but just losing part of me to her and losing a great deal of spontaneity in my life has been a trial, especially for my husband.

Be Careful.

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.

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. :)

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.

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.