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.