Confusion

I really appreciate those of you who have been checking the blog regularly. I hope everyone is finding it helpful and informative. This is going to be another short entry. It really has nothing to do with how busy I am. There simply is nothing new to share. Unless we experience obvious change, I will probably just give weekly updates on the subtle changes we are observing.

Alma woke up extremely disoriented this morning. She stated that she had no idea what she was doing here. It’s as if she assumed she went to bed at her house and assumed she would awaken there too. It reminds me of when I was a small child and visiting my grandparents. One minute I would be lying on the floor with my cousins watching the Sunday Night Walt Disney Movie of the week starring some child star turned “Real Housewife”, and the next minute I would be waking up in my bed. Of course, it is much worse for Alma as she is an adult who perceives herself to be of sound mind. I also wanted to note that last week there were a few days when she could not remember any of our names. This is nothing new. We just haven’t seen these behaviors demonstrated so clearly in quite some time. Nonetheless, her mood remains stable and she appears to simply accept whatever we tell her. This is another reason that it concerns us to consider the possibility of her living in an environment where that tendency could be abused. She is so incredibly compliant which makes our life easier but makes her a perfect target.

Back to Recipes

Alma continues to maintain a level of stability here. I am so grateful for this break in difficulties. While things are still challenging, it seems that we have all gotten used to the adjustments made in order to care for someone with special needs.

Alma does not appear to be either depressed or happy for the moment. Having a break from mood swings has been a welcome blessing to us. Since there really isn’t much new going on with her, I thought I’d finally get back to her old family recipes that I promised to share long ago.

The weather has turned blustery here in Virginia and we have had a really fun time getting into fall.  The recipe shared below is perfect for this time of year.

Pumpkin Cake

2 Cups Sugar

2 Cups Pumpkin

2 teas cinnamon

4 eggs

2 Cups Flour

1 Cup oil

½ teas salt

2 teas baking soda

Beat eggs and sugar until fluffy, add oil and beat well. Sift together flour, cinnamon, soda and salt and gradually add to the sugar mixture. Fold in pumpkin. Pour into prepared 9x13 inch pan and bake at 350 for one hour.

Frosting

1 8oz cream cheese

1 stick butter

1 Tbs vanilla

1 box of confectioner’s sugar

Beat together all four ingredients. Frost after cake is cool.  

Inspiration from the Dalai Lama

I may have already stated this, (I really need to go back and read what I’ve written here.) but wanted to share that I am relieved that we have finally emptied Alma’s house, brought anything we thought she would want over to our house, and put it on the market. It took over a year to complete this task and the last day was quite emotional as I removed the very last of her belongings. It is very sad to know that she will never live on her own again. Fortunately, she is in a place of acceptance (or complacency might be more accurate) and finally appears fairly content and happy to be with us.

I am glad that we were all able to hang in there this year. There have been many times when Keith and I were concerned that we could no longer meet her needs. I know that time is coming and we are slowly preparing for that day. There have been many times when our youngest daughter, Wrenna has expressed frustration that has left me questioning whether or not this situation is the best for all of us. More than that, I have struggled with guilt over Alma taking over our eldest daughter’s room when she first broke her arm. Kaiya moved out shortly afterwards and I worry that she felt pushed out. That being said, for now, we are able to meet Alma’s needs, Wrenna is learning much about kindness and compassion (a great lesson for any adolescent), and Kaiya seems quite happy having a place of her own. Overall, we are grateful that Alma can continue here for the moment and hopefully, we will be open minded enough to know when we can no longer meet her needs and a transition needs to occur.

The reason these blog entries have been few and far between is there is little new to share. Alma is fairly stable at the moment and we have come into a routine of sorts. She goes to Adult Care roughly three times a week and I schedule that around days where they have special activities. I use those days to get things done that I can no longer accomplish with her in tow. On days that I have her with me, I try to keep things low key but try to find activities she enjoys. The key has been keeping things as simple as possible.

I chose the below quote as a reminder (mostly to myself) that our lives are cyclical. We all depend on the kindness and compassion of others. Therefore, it is vital to be mindful that compassion only exists when we treat everyone with the respect and kindness that we all deserve.

“Right from the moment of our birth, we are under the care and kindness of our parents, and then later on in our life when we are oppressed by sickness and become old, we are again dependent on the kindness of others. Since at the beginning and end of our lives we are so dependent on other’s kindness, how can it be in the middle that we would neglect kindness towards others?" ~ Dalai Lama

New Shoes

No one said taking someone who suffers from dementia shopping for shoes would be easy. I’m not sure why I believed it would be; especially since I had my fourteen year old along as well.

I have no idea how old Alma’s shoes were but they definitely needed to be replaced.  It took me an hour to realize that she is no longer a size 8. To be fair, I wasn’t even the one who figured that out. It was my daughter (I suppose it was a good idea to take her even if it meant that I was out an additional $50.00 for boots she just had to have) who said, “Duh, Mom. Her toes hurt because you need a bigger size. I am happy to say that we found great new tennis shoes for Alma and she had a blast spending the rest of the day taking them on and off while showing us these shoes that appeared “out of the sky”.

Our week was fairly uneventful. Alma has been in pretty good spirits. Today we spent part of the day working on a jigsaw puzzle. I was sad to note that she no longer really understands how to fit the pieces together. However, she seems content simply locking them together whether they fit or not.

Finally, I want to share that Keith and I watched a really sweet movie about a couple dealing with Alzheimer’s. “Away From Her” is a beautiful film set in Canada starring Julie Christie. She was nominated for an academy award for her role. I think they did a lovely job illustrating some of the difficulties loved ones face in dealing with all aspects of the disease. Currently, it is available for instant viewing on Netflix.

Walk

Today was the Walk to End Alzheimer's. It was a beautiful morning here in SW Virginia and we had a nice little group for Alma's team. Alma did fairly well considering things were quite hectic and overwhelming. At one point, she said, "oh no, even the children get Alzheimer's!", as she was noticing all of the kids running around. I thought once we started walking, she would be happy to be moving but her mood seemed to become darker the farther we got into the walk. When we got home, I asked her if she had a nice time and she replied in her stern voice "No, this is not a nice time. I have Alzheimer's and it's serious!” I am thinking she was feeling self conscious and taking her on this walk was probably just a greater reminder of her struggles with this disease.

Alma has been with us for a year now. I have shared most of this already so I apologize for the repetition. When Alma came to live with us, my relationship with her was strained. I struggled greatly with patience and understanding when she lashed out at me. There have been many times when I’ve had to remove myself because I could not discern the difference between the logical understanding that Alma has little or no control over what she says and does and my emotional reaction of anger and hurt feelings. I still have those moments but they come less and less as my understanding of the disease has grown. I feel incredibly sad for her as I watch the seemingly never ending struggle between awareness and confusion. As hard as it is to watch this, I maintain that I am grateful for this experience. There have been so many rich moments and that is what keeps my family going. I’m having a hard time saying what I want to say so I would like to share a passage that Brene Brown, PhD posted on her blog a couple of weeks ago. It is from the “Velveteen Rabbit” and I found it to be an excellent representation of what this whole time with Alma has give to all of us.

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but really loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real, you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't often happen to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out, and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real, you can't be ugly, except to people who don't understand”

Nothing New

School started last week so I took advantage of my break from chauffeuring 14 year olds around to take Alma on some long overdue outings. On Tuesday we went to Natural Bridge. I have shared that Alma loves butterflies and they have a new indoor butterfly exhibit. Alma greatly enjoyed the butterflies and got a huge kick out of having them land on us. Afterwards, she asked to go the gift shop and excitedly picked out a butterfly t-shirt and some decals for her windows. On Thursday, we bought some of the last peaches of the season and made a batch of peach jam.

I am slowly learning that if I can stay calm and focused, Alma will be more at ease when we are out. The irony is that I am pretty high strung so it takes a lot of mindful planning to make things as stress free as possible. This might be a good thing for everyone who has to deal with me.

 The Alzheimer’s Walk is Saturday and I am a little worried that it may be too much stimulation for her. This thought did not occur to me as I signed up my whole family to participate. We will just have to pay close attention to Alma’s mood. If it does seem that she is beginning to feel overwhelmed, Keith said that he will take her home early.

Yet Another Adjustment

What would it feel like to be an intelligent, independent adult and have people constantly telling you what to do? The best word that comes to mind and describes such a situation is “sucky”. Another and probably more appropriate word would be “humiliating”. It would be absolutely humiliating, frustrating and embarrassing to know that the people around you, the people who are supposed to love you the most find you incompetent. They find you so incompetent that they are constantly telling you the most ridiculous things like “throw away your tissue” and “wash your hands”.

I recently read a book called “Still Alice” about a neuropsychologist who is diagnosed with early onset Alzheimer’s. If I remember correctly, the author wrote the book from the perspective of Alice, the main character who is afflicted with the disease. I believe it takes place over one year and shows a fairly fast decline. The author did a nice job sharing what it might be like for someone who is going through the process of losing their cognitive abilities. However, the author did not portray Alice as particularly resistant and angry about what was happening and the ways in which people respond to her. I think that would be a helpful bit of knowledge for those of us who are trying to care for someone struggling with this disease.

The nice thing about spending time with Alma is that she is able to articulate her frustrations in various ways much of the time. Her candor is an important reminder that she once was a perfectly capable, strong and very smart woman. The sad thing is that when I am in the mindset that things need to get done, I often disregard her need for respect, patience and tolerance. I have mentioned autonomy in the past but sadly, we are way beyond the ability to allow her much independence at this point.  Therefore, this balancing act has become quite difficult.

I have become acutely aware that it is vital to acknowledge that outside stimulation may cause increased agitation and difficult mood swings. Simply put, it seems that taking her shopping, to a restaurant or even out for a walk in the neighborhood is incredibly stressful for Alma. After she had a loud meltdown at Target last week, I realized that we need to make yet another adjustment to out routine at home. I have been reluctant to cease taking her places because I was convinced that it was “good for her” to be out. Clearly, I was wrong. I am learning (slowly) that it is important to keep things as quiet, calm and routine as possible. Sadly, I’m not sure how much more our family can adjust to create the environment for her that she needs. As much as we would love for her to be with us, we are realizing that a memory facility will be able to give her the structure and routine that she needs to reduce stress. We plan to begin looking at some different facilities in the area and will keep everyone posted on our progress.