Another difficult week

I haven’t written much lately because I am spending most of my time and energy helping Alma and simply do not have time to give this. I wish I could report that things ahve been wonderful and we are simply enjoying the beautiful spring here in Virginia. Unfortunately, this has not been the case.  I understand that there is no real formula for the progression of Alzheimer’s. What I observe is the fact that she seems to be much worse in the last month and the moments of clarity are few and far between.  She does seem to benefit from being comforted and reassured that she is safe. Her focus this week has been about her fear of being abused either by us or in a nursing home. She has talked a lot about her mother and difficulties taking care of her. She talks about how easy it is to lose patience with someone with dementia. I spend a lot of time reassuring her that we will not hurt her and will seek help if things become too difficult. The difference between our situation and the situation she had with her mother is that I have a great support system. We have a community of close friends and family. I am not working a full time job like she was. I have Keith, Kaiya and Wren for support and to remind me when I am frustrated that my expectations may be unrealistic. 

One of the most difficult aspects of this situation is watching someone who I once knew to be so intelligent, organized and competent become so disoriented and confused. It’s surreal and hard to believe at times (that’s when the unrealistic expectations creep in). I know that if Alma from ten years ago could see herself right now, she would be devastated. This is exactly what she didn’t want to happen. Her dignity was always so important to her. She had a huge sense of accomplishment and pride. It’s as if all of the insecurities that she tried to push away all of these years are coming out in a steady stream of emotion. That being said, I appreciate getting to know her on a deeper level. There is an honesty here I have never seen before. I have always respected Alma as a very competent and controlled person. Now we have the opportunity to connect with her on a much personal level. My hope being that on some level she will reap the many benefits.

Are things getting worse?

We are so saddened about the devastation in Japan and I believe that hearing bits and pieces of this may be really stressing Alma out. She loves to watch the news and read the paper and, like all of us, is greatly affected about what she sees and hears. Unfortunately, it is really difficult for her to process that information and therefore it just sits there, stewing with all of the other difficult feelings she is having. I am wondering if it is our responsibility to protect Alma from these types of stimuli. She has always been proud of her knowledge of current events and I hate to take yet another one of her dwindling supply of activities and hobbies.

When I last posted, I commented about Alma’s upbeat mood. She did have a nice couple of days and then things went downhill pretty fast. I haven't had a moment to write because of all of the energy it's taken trying to keep Alma somewhat at peace.

It all started Friday with some extreme mood swings. This was probably to worst day so far. Alma has a tendency towards depression and rarely expresses anger outwards. Perhaps, the news of the tragedy in Japan was too much for her. Whatever it was, it came out extreme and quite harsh. We spent the morning running errands with my oldest daughter, Kaiya. Usually being out and having Kaiya around cheers Alma up. By the time we got home around noon, she was pretty disoriented and had a really hard time figuring out who I was. It was so odd because she knew my name. However, she assumed that she had just met me. She was very confused as to what my role is in her life. By the end of the day, she was angry and really acting out. As I was getting ready to leave with Keith for a rare night out (we had someone sitting with her), I asked her if she was okay and she sternly replied, “I am, but I don’t know what your problem is?”

So what would be the logical thing to do with someone inflicted with dementia that had a really bad day? It probably would not be to get up the next morning and take her downtown to where there are thousands of people who began drinking at noon to watch the annual St. Patrick’s Day Parade. It definitely wouldn’t be the intelligent thing to take this angry and disoriented person into the most concentrated part of the festivities; a place where people with really poor judgment decided it would be a great place to take their Pit Bull and chain smoke while ignoring their toddler as they tried to climb the obviously out of control animal while trying in vain to catch a glimpse of a leprechaun. Apparently, I wasn’t using great judgment myself when I came up with the idea to distract Alma with a harmless little parade with thousands of drunken spectators. Bad, bad idea.

On Sunday, the effects of my poor judgment became obvious as Alma’s frustration seemed to grow greater. Even with a lot of one on one time including a three mile walk and several hours spent out in the yard, she had no idea who I was other than my name and the fact that I kept telling her I was married to her son. She couldn’t figure out which one because she told me she had six or eight sons. She did not recognize Wrenna and I’m not sure she recognized Keith either. She told me I was keeping her from all of her friends and she just wanted to go home. She asked me, “What kind of nursing home is this anyway?”. I can only assume she wanted to know where the other “residents” live.  In light of her disoriented state, I finally surrendered to the fact that sometimes a calm Sunday at home is what is in her best interest and am proud to say that I refrained from taking her to roller derby that afternoon.

I am pleased to report that while today has been pretty hard (she was fixated on the fact that “someone” chastised her for leaving tissues everywhere and that I don’t want her here so she should “go now”), she knew who I was and why she was with us. While I know the behavior over the three last days is just a small glimpse into what the future holds here, I do not regret for a second our decision to have Alma live with us. As hard as this is, recent events remind me of how precious life is and what little time we have together. Not only am I appreciative for this time with Alma, I am grateful for the richness this experience brings to my entire family. This is my anchor when frustration sets in. That and roller derby when I can find someone to hang out with Alma.

Positives

With Altzheimer's, it's easy to focus on the negative aspects of the disease. To be fair, it is the way the disease is progressing that I have wanted to track here but that leaves very little room for the good moments. I am happy to report that the lat couple of days have been pretty good (knock on wood). Alma has been in good spirits and I'd like to share some of that here. I'll begin with yesterday morning.

Yesterday morning, I was getting ready for a few of my girlfriends to come over and have lunch at my house. I was in the kitchen washing dishes and listening to Lucinda Williams on XM radio. I heard Alma coming down the hall and she came in the kitchen dancing and laughing. It was really hilarious and quite out of character (remember this is someone who has a lifetime of repressed feelings). The only other time I've seen her dance was when she was dancing with Wrenna to that Wii game. She came into the kitchen shaking her hips and said, "I like when you play this good music!". This morning she is in an equally good mood so I'll just keep the music going and hope for the best.

Feeling Lonely

I realized this morning as I was desperately trying to get Alma to see that we really do want her with us that she has been terribly lonely for quite some time. I came back from dropping my youngest daughter off at school and Alma was on her bed sobbing. When I left to take Wren, she was laughing and happy. That being said, I have gotten quite used to these extreme mood swings so I really was't that surprised. Last night she had cried herself to sleep even after a full day with Kaiya and a new haircut by me (no, I am not a hairstylist and have no experience cutting hair other than trimming my own bangs-something my hairstylist would prefer me to refrain from. By the way, the new do is totally adorable and I took some pictures to share). Anyway, as Alma was telling me that I just don't care about her, I had a small epiphany (duh-I should have already realized this).

Alma lived alone for over 20 years. According to Keith, even when he was at home, she didn't interact with him much. Not only did she live alone, she also kept people at arms length. In recent years, it had become hard to get her to even participate in family activities such as birthdays and holidays. She was incredibly lonley, I'm sure. However, she would always tell me, "I'm shy and don't really like large groups" so we didn't push her. I see now that living with us and being part of an active, loving and close family probably makes all of those years of lonliness surface in the form of great sadness. That would explain why when I am with her and we are actively interacting, she seems happy and when I am otherwise engaged, she begins to sob. It's during those moments when she tells me no one wants her here. It must be horrible to feel like such an outsider in your own family. Even though Keith would like for me to take a more minimalistic approach to interacting with her, I believe that there is a real opportunity for healing here and I would like to try some attacment therapy techniques with her. I have attached a link to the Foundation for Family Healing under Resources on the right side of the blog. Dawn Wadiak is the founder of the Foundation. She is a trauma and attachment healing specialist. I have had the opportunity to take a couple of workshops with her. Her work is centered around children but I feel that many of her techniques can be applied here. The challenge will be to do this without burning out so I am working on some resources to give me breaks when needed.

The Patron Saint of the Under Appreciated

Last Christmas, one of my friends gave me a necklace of The Patron Saint of the Under Appreciated. On the front is a matronly woman and on the back it says, "This kindly saint watches over all who deserve more credit and are constantly overlooked by family, peers and employers". Recently, I passed that necklace on to Alma on one of the days when she seemed particularly down. Since then, she hasn't taken it off. She loves to read the back to me and laugh at the ironic truth of what it symbolizes. I have to agree that from what Alma has shared with me, I gather that she has been incredibly underappreciated at many times in her life.

Alma as the Patron Saint of the Underappreciated.

Missing Family

This morning Alma woke up sad and crying. She thought her brother Richard, pictured above with her in Europe was supposed to come for a visit. She had her bags packed and ready to go with him (this has been going on for several years-one time about a year ago she brought her coffee maker over at 5am because she wouldn't be needing it at Richard and Glendas.) and was quite disappointed because she was convinced that he had come to Roanoke but did not even stop in to say hello. I could not convince her that he had not been there but I was able to distract her long enough to go through some more of her wonderful pictures. The thing I found the most interesting is that she doesn't really share stories as much as share her perception of the character of each person from the pictures. For example; "Richard is a good sweet boy and his wife, Glenda is so beautiful" she says. I love hearing her take on the people in our life. Some of it is quite hilarious (I'll refrain from the really outlandish statements....for now).

This is Alma's Aunt Teenie, her mother's younger sister, and she still resides in Waverly, Tennessee. Alma loves her aunt and talks about how sweet she is. She said, "Teenie will take in anyone and feed them. She is such a good cook.".  She drove the 8 hours to see Teenie at least twice a year until about 4 years ago, shortly before she stopped driving.

Alma's grandfather, BW Runions, the Barber, and and an unknown man.

Alma talked very briefly about her paternal grandfather, BW. I asked what BW stands for and she said, "I don't know, he's just BW."

Another way of looking at things

Disclaimer: This has not been a good day. Alma isn't happy and I'm not handling it well. Therefore, instead of focusing on all of that, I'm going to focus on the positve aspects of caring for a family member. One of those being learning about family history. One of the best ways to do that is to look at pictures while they share stories. Here are some pictures that Alma shared with me today. Unfortunately, the stories are a bit fragmented. I will work on that and post later.

Alma, Kenny, Connie (Alma's Dad) and Kevin

Alma and Keith

Connie and Ethelyn Runions

Harry, Connie, Ethelyn, Richard and Alma Runions

Harry and Richard

Gladys, Granny Thompson, Harold, Ethelyn, Christine (aka Teenie)

Ken, Kenny, Alma holding Keith, and Kevin

Alma (pregnant with Kevin) and Kenny