Swim Meets, Ceremonies and Our Busy Lives

The last week has been full of events for our family. Most of these special occasions occurred in the evening and the fact that Alma prefers to go to bed between 4pm and 6pm has made her routine difficult. Because she is such an easy going individual, everything went as planned and we made it to all of our events without incident.

It's amazing how much our lives have changed in the last several months since she has been living with us. We didn't really consider how difficult it would be just going out for dinner after a softball game or simply going to a party. Alma has always stated that she really doesn't care for socializing and we have had to adjust our social lives accordingly. She is easily overwhelmed in a crowd and was especially stressed out at our daughter's eighth grade "graduation" where 158 families were packed in an auditorium designed to seat no more than 400 people. She completely shuts down when faced with too much stimuli and becomes almost immobile. Her brain just doesn't seem to be able to tell her body where to go next. I have no idea what people must perceive as they see us leading a perfectly normal looking adult woman through a crowd like a toddler.

Another challenge is that both of our children are on a swim team together. Part of being on the team is a commitment from parents to volunteer to do various jobs to keep things running smoothly (the only paid workers are coaches). Even though I have expressed to organizers that one of us has to constantly supervise Alma, people just don't seem to understand. They look at her and talk with her and she presents very well. However, the moment she is left alone, it seems that she forgets where she is and many times will become confused and wander. The fact that Keith and I have always been willing to do more than our share at these swim meets has inspired organizers to always want to grab one of us to fill in when there’s a need. Last night was no exception. Keith was busy doing his part as a parent volunteer and I was hanging out with Alma watching my girls swim when a coach grabbed me to help time while one of the scheduled timers went to swim in their heat. I am usually more than happy to help out but when I said I needed to stay with Alma, she gave me an exasperated look and I caved. I took Alma over to sit near Keith and went down to time for what was supposed to be five minutes. After 25 minutes, I explained to my partner that someone was going to have to take over and she responded curtly, “She will be right back! She is swimming!”. The "swimmer" had actually been finished swimming for fifteen minutes and was nowhere in sight. By the time she came back, I was pretty irritated and frustrated and more than likely, it showed. The point here is that it seems I have been presented an opportunity to maintain better boundaries than I have in the past. It seems that my need to do everything for everyone is being overshadowed by the great responsibility that I have signed up for and that is not a bad thing at all. For a long time I have needed to know when to say when and our situation here makes it impossible to avoid. Thus, we have another example of the way that Alma has had a positive impact on our lives by being with us.  I wish I could somehow make her understand this but since I can’t, I will use this opportunity to say thank you, Alma.

Necklace

Packing up....

Since Alma moved in with us last August, we have been faced with the daunting question of what to do with her home and everything in it. Right after she broke her arm and we realized that she really had no business living alone, we went in and packed up all of her photographs, movies, books and other items that were important to her and brought them over here. We set up a bedroom for her and placed some of her significant "favorite things" in there. She had a couple of other pieces that Keith said had been around for as long as he could remember so we incorporated those along with some of her framed photographs into our home. Our hope was that this would help her feel that our home is now her home too.

It is now nine months later and we hadn't really addressed what to do next. We managed to get most things packed up so we could have the interior painted yet the question loomed, "what are we supposed to do with all of this stuff?". We live in a modest ranch style home and have managed to fill it with our own eclectic collection of junk over the years. There really didn't feel like there was room for more. The good thing is that Alma has always been a very practical person and the only things she collected was movies, photographs and books so once we got those things over to our house, there really wasn't much left; at least that's what we thought.

Once Alma began daycare, I began cleaning out her home. It is such a weird feeling going through someone else’s life. Because this has occurred over a long period of time, I was able to uncover many layers to Alma’s existence. It’s like reading someone’s diary and felt very invasive yet there really was no choice but to keep going. In the beginning, we were simply throwing away expired food (there was so much of that). Our perception of Alma living simply and clutter free was somewhat shattered as we uncovered years of junk mail stuffed into various items from her bookshelves to food boxes in the pantry to every piece of luggage and clothing she owned. She had massive piles of clothes stuffed in closets and dressers. Dirty clothes mixed in with clean clothes and wads of tissue among all of it. I found what I think was once a cake, fuzzy and green inside of a container on top of her refrigerator. It was at this moment that we realized that Alma had been left alone for way too long.

Once we moved Alma’s most important belongings over to our house and we realized that there was really no use or value too much of what was left, we began the task of donating the rest to the Goodwill. I did allow my adult daughter, who was displaced by her grandmother and now living on her own, to get whatever items she needed to set up her first home. She and her roommate got a very old and worn out couch (that Alma asked to get back one day when she was at Kaiya’s house-Kaiya being the sweet and sensitive girl that she is said, “Of course you can have it back, Granny”), a dining room table and chairs circa 1982 complete with white shellacked trim, a bookshelf (our daughter inherited her grandmother’s love of books) and a few other odds and ends. Then Keith discovered that a necklace he made his mom several years ago was missing and stated he needed to go through each piece of clothing before we proceed further. Thank goodness he found that piece eventually and I was able to move on. I felt overwhelmed as I made my weekly visit to the slowly diminishing pile to take car load after car load to the Goodwill (one of my favorite organizations-they do so much for our community).

Finally, one of my best friends came to the rescue and we were able to finish this almost year long task. Nancy, “the tornado”, would be leaving town for the summer in a few days and being the straight forward person that she is decided it was time to make me quit my whining and just do it. As we neared the end we discovered more pictures, articles, and surprisingly journals/diaries that she had kept. While it was extremely sad getting down to these final layers, it was also beautiful to discover what was underneath it all; a woman who cared deeply about so many people in her life but struggled with how to show them.

Note: One thing that is hard here and I don’t want to minimize is that we had to make a lot of decisions on behalf of Alma. We saved many things from her children, grandchildren, brothers, nieces and nephews. We will make sure that they get back to those family members to the best of our ability.

Hanging in there...

As stated previously, if the weather is nice, my posts will be brief and few and far between. It's been so beautiful here in Virginia so we are spending most of our time outside. I do have a laptop but the battery needs to be replaced and it doesn't hold a charge for very long.

Mostly, I wanted to share that Alma has continued to be very easy going these last several weeks and that has made our lives here very easy. Sadly, what perpetuates the good mood appears to be the same elements that affect her cognition. In other words, when she is less lucid, she is more agreeable. When she is more cognizant, it seems as if her awareness creates discord within herself. While many people may feel that it is better for Alma to remain lucid, I believe that when she is less so, her inhibitions decrease and she seems happier. The downside is that her need for physical assistance has become greater. However, I would much rather deal with physical demands that an angry and frustrated person. Even when she has a moment of frustration, she is easy to redirect and responds jovially.

Duh...

Still really busy and the fact that the weather is beautiful will mean that there will be less posts here. That being said, Alma continues to do really well and seems to be in a fairly "peaceful place" at the moment. I did want to quickly share one little moment from today.

I have talked about Alma's fascination with tissues. She has folded tissues everywhere and many times the cleans ones get mixed in with the used ones therefore contaminating all of her tissues (I'm a bit of a germ freak). Over the last couple of weeks, she has been storing her tissues in a dresser drawer with her clothes. I kept cleaning it out and telling ehr not to put them in there. She would tell me "I didn't do it. I'm good." over and over again. I'm not sure why this took me so long but today I realized that instead of arguing, I should move the clothes and just let her stick whatever she wants in there (within reason). All I have to say about this epiphany of mine is "DUH!!!". Oh well, maybe one day soon I'll learn to stop trying to make her conform so much.

Time to Re-group

I realize that I really haven’t been keeping up with this blog in the way I had originally intended. The last month and a half has been quite hectic and that has nothing to do with Alma. Before I get into an update on how things are going with her, I would like to take a minute to re-focus. Our focus has shifted slightly as Alma is having a peaceful period and I have been able to attend to areas of my life that have been sorely neglected.

One of these areas would center on my children. To be fair, my oldest is in college and living on her own and is functioning well as a responsible young adult. However, I worry that my fourteen year old daughter has had a more difficult time adjusting to these changes and it makes sense. She is the one that was hoping for some one on one attention from her parents once her sister moved out and most of our attention has been focused on her grandmother.

I bring all of this to attention because of a recent gathering I had at my house where a friend was adamant about pointing out all of the possible negative impact that having a grandparent with Dementia living with us might produce. I found myself getting quite defensive with this person and justifying our decisions with a rant about the sad state of our society and the importance of multi-generational living. I was also caught off guard by this individual’s concerns because I met this person years ago when she was living on a commune in Rockbridge County. I thought if anyone would appreciate opening one’s home, it would be her. Nonetheless, she made excellent points about the impact and strain not only on the caregiver, but on the entire family. Perhaps I am being naïve but I would like to state “so far so good’. In other words, I stand by our decision and while this has been a bit of a balancing act, I feel the benefits outweigh the stressors. I just can’t help but feel that both of our children will benefit greatly from this opportunity.