Blessings and other stuff

Disclaimer: This post has not really been edited. I just wanted to get something out there so please forgive my poor grammer and writing. Oh well!

In the spirit of being grateful for all of the blessings in my life (truly the only thing I like about Thanksgiving), I want to share that I am so happy that this blog has been serving its purpose; to bring news and information to family and friends. I love the feedback and support that I have received both on the blog and via e-mail and face book messages.  It is really validating to hear from everyone and I just wanted to say that I really appreciate it.

One of my hopes for this blog is that I would share our story with other families who are also touched by Alzheimer’s. My wish being that others who are dealing with the disease might also reach out and share their experience through the blog. Any insight we are given is greatly needed and invaluable at this stage. I have rarely shared this blog openly. Mainly, I have shared it with family and friends and some of you have passed it on. Anyway, I just wanted to remind everyone that it is fine with me to share this with anyone whom you feel might benefit or add to the blog.

Over the last week, Alma has continued to have night time toileting mishaps. Keith put a latch on the closet door so she can no longer go in there to use the bathroom. It works most of the time. There was only one time since he put the latch there that she figured out how to open it. It was a rare, lucid moment and for some reason, at night she seems to believe that the closet is a bathroom.  One thing that I am trying is getting her up at night to go to the bathroom before I go to bed. It helps a little. However, most of the time, there is still a mess in the morning. I think I will start getting her up during the night as well.

I’ve shared that Alma has been fairly calm and compliant. For the last several moths, she has been fairly easy going and I made the assumption that we were beyond the “aggressive stage”. However, last night, she became quite agitated at bedtime and for the first time in months; she threw a bit of a temper tantrum. It really took me by surprise. However, she was much easier to redirect when I simply gave her a few moments to stomp around. If there is anything this whole experience has taught me; its patience. Historically, I am extremely impatient and that simply doesn’t work when caring for someone with Dementia. It has been interesting to go back and see how situations have been managed over the last year and a half. A year ago I would have chased her around the house until she calmed down. It would have taken twice as long as giving her the three minutes she needed to feel less threatened. That paired with a quiet and cheerful tone of voice makes all the difference at this point.

Finally, I wanted to share how grateful I am that we have found a way to get out of the house as a family again. Taking Alma anywhere is stressful for her and me at this point. Therefore, our social life has suffered as a result. Thankfully, one of my good friends made the suggestion that her 16 year old daughter come over and sit with Alma. We have rarely hired a babysitter for our own kids and never really thought of that as a possibility for Alma. All we need is for someone to be here in case Alma gets up at night. It was so nice that Seema came over and helped me get Alma ready for bed so we could go to a friend’s house for dinner. She was kind and compassionate with Alma and I felt completely comfortable leaving her. Thank you, Seema!

Humbling Moments

It’s been a couple of weeks since I’ve posted any news about Alma. It’s not because I have been too busy to write or there is nothing new to report. The truth is that she seems to be experiencing some dramatic changes and I haven’t figured out a way to share what is happening here while honoring what little dignity she has left. While I feel it is important to share the progression of this disease, I continue to struggle with the ways in which I can share those events that is respectful to her.  The point of this blog is a way to track what is happening. The tricky part is doing so without revealing too much personal information. 

What I would like to note here is that Alma is no longer leaving her room to use the bathroom at night. For whatever reason, she is using her closet as a bathroom. I’ll spare everyone the details of this. Those are things I had shared in the previous and now deleted post (too much detail).  In the last couple of weeks, we have become reliant on adult disposable undergarments as a way to keep the mess to a minimum. On top of all of that, one early morning last week, I was helping Alma clean herself up after a particularly messy night and she had some kind of moment that was almost seizure like. She was getting out of the shower and was drying off when she started getting shaky. I thought she was just dizzy so I helped her wrap up in a towel and sat her down to blow dry her hair thinking that her dizzy spell would pass in a few moments. When she started shaking more and falling forward, I realized that something more was happening. I said her name and she couldn’t look up at me so I got down on the floor and started talking to her. She just stared at me blankly and opened her mouth but no words came out. At this point I yelled for Keith thinking we were going to have to call 911. The whole thing passed pretty quickly as she started responding to me again and was back to her “normal” self.  I put her to bed and called the doctor and took her in as soon as they would take her. After examining her, the doctor thought it was probably “just a drop in blood pressure” and told me to simply lay her on her side the next time this happens. Nonetheless, I left there feeling inadequate to handle the fact that this is only the beginning.  

All of that paired with the fact that she can barely speak in complete sentences anymore has made me even more aware that things are just going to continue to get worse. I have always heard about the stress taking care of someone can have on a person and/or family. I think we prepared as well as we could for all of that. That being said, there is no denying that I am feeling quite conflicted when I think about how much harder it is going to get to continue to watch someone we love decline so dramatically. I put those feelings aside when I came to the realization that the alternative would be to place her in a facility where I do not believe they can take care of her basic needs. If they can’t even help her brush her teeth during a one week stay, how am I to be assured that she won’t be sitting in her own filth most of the time?

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”