Better days

It's amazing what some sunshine and diversion can do for Alma's mood. She is so much more upbeat today and I am so grateful. I am curious if some of it has to do with her talking about her mother yesterday. She seemed somewhat lighter after that and then she went off with Kaiya for the afternoon. When I came home she was in the driveway with Kaiya, my friend, Kelley and her son, Silas (Kaiya had been babysitting). Alma was smiling and happy.

Last night we went to my daughter's softball game where Alma (usually quiet) continued her lively interactions, laughing at small children playing at the side of the field. This morning she woke up very early and made her bed and was sitting in the living room, dressed and ready to go (at 6:30 am). I was worried that we were in for another hard day when she told me she was scared in a very meek voice. I told her we would be with her and her whole body relaxed as she expressed a sense of relief at that. In the car, on her our way to her physical, she was laughing and told me she loved going up to "old ladies" in the store and telling them they are pretty. She said that she loves the way they always smile at that. Let's hope the mood sticks throughout the day.

Some history

Disclaimer: this is going to be a quick post. I have a rare morning to myself thanks to Kaiya (she is so awesome!) and want to take advantage of a beautiful day. I also want to warn those who may be close to Alma that I am going to share some history that Alma shared with me on our walk this morning. I feel that it is really important to share her story.

Yesterday was a rough day. I started writing about it and the negativity was so evident that I am refraining from posting what I wrote. Finally, after a long and emotional day, I allowed Keith to take over and simply left the house for a while (Thanks Robin for going for a walk with me. You are the best). However, Alma became restless in the middle of the night and started pacing the hall and going in and out of her bedroom and bathroom. This morning I was feeling pretty frustrated by the time we left for our walk and I'm sure Alma picked up on that.

There is something so therapeutic about walking outdoors in the spring. Thus, Alma began to talk about her childhood. She began with "my daddy was an alcoholic and used to beat my mother" but went further today. She shared that her mother took a lot of her anger out on her. I've heard stories about rose switches and her mother getting angry but I'd never heard about her mother kicking her out of the house for the night. She said she was only seven and had to spend the night outside with no blankets. She talked about the way her father would beat her mother if he caught her being mean to Alma. Alma said that only made things worse and her mother took it out on her even more; calling her names and shaming her in front of others. She said her mother kicked her out multiple times and she would often go to her Aunt Teenie's (pictured below) home but felt guilty about going there too much. She didn't want to "put anyone out".

It is so evident to me that Alma has never had the opportunity to work through her painful childhood and that pain comes through more and more lately. Even though I spent several years working with women and children living in family violence, it never ceases to amaze me how perpetual that cycle can be. Alma often acts out with her won brand of anger and resentment that comes out in the most passive ways (other times more outright). I understand there is very little I can do for her as far as healing goes and as I write this I am reminded that the best thing to do is just continue being supportive. I would like to acknowledge that there is no way I could do that if I did not have such incredible people in my life who keep me grounded. I suppose I'll end on that sappy note.

Busy Bodies

Why is it that at times Alma seems to be completely confused and at other moments, in certain situations, she appears totally fine? I believe this is part of the reason that it took us so long to realize that she really needed full time supervision.

I bring this up because some of our neighbors (also Alma's neighbors) do not seem to understand why we have brought her into our home. Her next door neighbor was particularly candid with his opinion of our decision. It has been almost nine months and he will no longer speak with us. He and his wife felt that she was fine and we should have made our 20 year old daughter move in with her instead. To be fair, I am pretty sure that Alma did not speak highly of us at the time she was living on her own. The caretakers that we hired would often share stories of Alma talking about how we want nothing to do with her (not the case at all-we included her in all family activities and we certainly would not have her living with us if we didn't care). That type of paranoia is normal with dementia. I tried to explain the situation to Mr. V stating that we have, in fact, been taking care of her for over five years and it was our decision to move her over to our neighborhood in the first place. I also explained that we have been managing two households for three years as well as going over there twice a day. We worked hard to keep Alma independent. We believed that, as long as she was safe, her quality of life would be better if she could stay in her own home. Even when she broke her arm, we had her stay with us but had initially thought she would go back home after it healed. It wasn't until she was with us full time that we realized how many of her basic needs had been neglected. She could not prepare food, bathe or dress herself any longer. There was so much I never noticed (or maybe ignored) because I was always frantically trying to maintain my 45-55 hour work week, my children's needs, her home and mine. I had a terrible sense of guilt once I figured out that she could no longer take care of herself. I’m not sure why I had such a need to explain myself to someone who doesn’t really know Alma or our family very well (if he did, he would clearly see that she needs help). All I know is that I was truly bothered when I heard from another neighbor (Alma’s walking buddy) that he was really upset and had been talking to several other neighbors.

My point here is that it has been quite a struggle with our neighbors who think she was functioning fine on her own. Alma is so quiet and many people are drawn to her because they think she is a good listener. She nods at the appropriate time and laughs at their jokes. Many of us are too self-centered to realize that she has no idea what we're talking about most of the time. She knows her name, her date of birth and her address. Sadly, most people don't dig deeper than that and seem to think there is nothing wrong with her until they find her wandering the street at 5 am trying to figure out who the people in her house are (that happened shortly before she moved in). It's amazing to me how well she can present herself most of the time. Sometimes it appears as if she can turn it on and off at just the right moment. I’m not sure why it bothers me so much that there are people out there who disagree with our choices. I suppose my preference would be that they put aside their judgments reach out to Alma if they are so concerned for her welfare.  Perhaps, when the weather turns warmer, I can invite her neighborhood friends over to visit her. The truth is that these neighbors are not simply busy bodies with nothing better to do than judge us. They are caring people who have gotten to know Alma over the last several years and "neighborly" thing to do would be open my home to them.  We obviously share a common sense of wanting what is best for Alma and it seems that it would be in her best interest to benefit from such supportive and loving relationships.

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.