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.

Memory Walk

I knew summer was going to get in the way of keeping up with sharing what’s going on with Alma. The weather has been so beautiful and we have really taken advantage of having a summer “off” to enjoy being outdoors. That being said, people aren’t reading this to hear about what I’ve been doing this summer. An update on Alma is long overdue.

Since her last stay in respite back in late June, Alma has had some fairly extreme mood swings. There were a couple of weeks where she was extremely giddy and downright silly much of the time. After that, we went through some tremendously difficult days with extraordinary bouts of anger that include her trying to backhand me (unsuccessfully). Most of those seemed to be triggered whenever we ask her to do something like wash her hands (something I am not about to give in on).

Where are we now? It seems that as things become more difficult, people have a hard time refraining from wanting to “fix” this situation. I’m sure if I went back through and re-read everything here, I would see a pattern of behaviors mixed with a pattern of suggestions from family, friends and professionals. The thing is (and I am sure I am repeating myself) that there is nothing left to fix here and that is really hard for this social worker to admit (humbling yet hard). Alma is currently taking the maximum doses of medication and all we can do is try to keep her safe at this point. While it is hard for all of us to watch, it is important to remember the mission here and that is to give her unconditional love and support.

In the spirit of all of us wanting to fix this horrible problem, I would have a way we can all help. I promise to get back to sharing about Alma’s family and recipes. At the moment I would like to make a plea for support that anyone can give to the Alzheimer’s Association. On September 10 in Elmwood Park in Roanoke, our family (including Alma, of course) is participating in the “Walk to End Alzheimer’s”. I am attaching the link and encourage any of you to register to join us by looking under “Alma’s Team” or sending a donation under our team page. If you are not in the Roanoke Area, there are walks happening all over the county. I implore all of you who are interested in seeing a cure for this terrible affliction to please look into it.

I know I’ve said this before but I want to reiterate how much I appreciate all of the support our family has received involving Alma. There is no way we would be doing this well if we didn’t have that level of help. Thank you.

http://www.roanokewalktoendalz.org/

Losing control

It’s been at least a couple of weeks since I have last posted on this blog. As I predicted, we have been pretty active this summer and I simply haven’t had time. An update on Alma is well overdue.

Currently, we are dealing with extreme mood swings. Alma goes from laughing hysterically one minute to sobbing, yelling and slamming doors the next. I’ve had several people suggest we talk to the doctor about “tweaking” her meds. Not only is Alma on the maximum dosage for all of her medications, but changing medications and dosages also comes with a change in side effects. Essentially, we would be trading one issue for another.  We are not convinced that the benefits would outweigh these consequences. A lot of these opinions come from the day care and other “health care professionals” who want to fix the problem. Her doctor is fairly non-invasive and does not push extra medication. The grave reality here is that there really is no fixing anything at this point. All we can do is ride it out with her and work hard to protect ourselves from physical harm while comforting and supporting her to the best of our ability.

I mention “physical” harm because Alma is starting to lash out more. She threw a shoe at me the other day (luckily it was one of those Toms shoes and they are fairly lightweight). She also locked herself in the bathroom. We keep a key nearby so that she can not truly lock us out. On a positive note, these outbursts tend to tire her out pretty quickly so she falls asleep shortly after one. When she wakes up, she has forgotten that she was ever angry.

I do plan to continue posting her family recipes and will get back to that shortly. In the meantime, I do hope everyone is having a lovely and relaxing summer.

Wishing for Home

Have I mentioned that my husband, Alma’s youngest son, Keith, is a bit of a culinary snob? As I sift through all of these recipes I am perplexed about that character trait in him. These recipes are calorie laden, fat filled, and comfort food at its finest. These dishes are the kind you find at baby showers and church picnics. I can tell from the way they are so worn out that they have been well utilized over the years. Due to the fact that Alma has been especially nostalgic for Waverly, Tennessee, I have thought that I might start recreating some of these recipes for her. She has been especially missing her parents and has spent a lot of time wandering around and talking about them being “missing”. Therefore, Keith may have to put his delicate palate to rest so that we can give her a minuscule taste of her childhood.

I thought about doing a really shortened and much less glamorous version of “Julie and Julia” for the purpose of bringing Alma’s food to life.  However, I do not have the discipline to commit to preparing specific food every day nor would that be a very health conscience choice to make. So, I will quietly share recipes here and may occasionally make one for Alma. I’m sure everyone here will be better off for it.

Alma made this Applesauce Cake (recipe below) for her mother every single day when I first joined this family. She made them into muffins every morning before she went to work and would just leave them on the counter for Ethelyn to grab whenever she wanted.  I remember Keith’s grandmother walking around with pockets full of muffins. Eventually, I would find them in her drawers, in the couch, and anywhere she could think to stash them. I’ll just say that I have not adopted this technique as part of Alma’s care. I’m way too uptight about messes and the possibility of rodents for that but it really was kind of hilarious at the time. Enjoy.

Applesauce Cake

¾ cup Margarine

2 cups sugar

2 eggs

2 cups applesauce

Pinch of baking soda and salt

3 cups flour

1 teaspoon cinnamon

½ box of raisins (soaked in warm water for half an hour)

1 cup black walnuts.

Grease Bundt pan or line muffin tin. Fill and bake at 350. (50 minutes for cake. 20-30 for muffins)

Staying Connected Through Family Recipes

Alma’s very sweet friend, Judy called today to see if Alma wanted to go to church. They always go twice on Sunday and Wednesday evenings. Due to busy summer activities, it’s been a while since anyone has asked her to go. Alma left her church several years ago and Keith and I never questioned her about it as we believe that religious practices are a personal decision. When Alma came to live with us last August, Judy and Alma’s friend, Ann have been kind enough to check in regularly about taking her to church on Wednesday evenings.  Sometimes Alma wants to go and sometimes she is too tired. However, today when Judy called and I started to respond that I will ask Alma, I realized that maybe Alma is beyond going to church with her friends.  When I told Judy this, she agreed saying that Alma tried to leave the last two times she took her.  Judy went on to share that during Alma’s last stay at Emeritus, she went to visit her and Alma didn’t seem to know her. When she introduced herself to Alma, Judy said Alma replied, “Oh Judy!”, as she turned to another resident and started laughing. They both walked away laughing and Judy stated that it seemed that Alma seemed content and happy enough and left. The fact that Alma is recognizing people less and less seems to indicate that she may be easily stressed if she becomes aware that she is in an unfamiliar setting.

That being said, it is wonderful that Alma has these connections and I can not say enough how grateful we are that so many people reach out to her in this way. I can’t imagine how hard it must be for friends and family to see Alma so disoriented. I live with her everyday and there are moments when I am hit with the gravity of her condition. Keith and I were talking and it really hadn’t hit me until recently how much worse she has gotten since she’s been here. We are managing her meds on a more regular basis, she is eating better and having a lot of social interaction yet she continues to slide and it’s happened quicker than I realized. In light of that, I would like to get back to some of my original intent and try to share more of her history. When my friend, Nancy and I were cleaning out her house, we found some cookbooks and a bunch of family recipes. I thought it would be nice to post some of those here.

When I met Alma, I was a young idealistic vegetarian and I’m pretty sure she had not really had much experience with preparing meat free meals. Things became even more complicated when my children were born and we continued to raise them vegetarian. I was touched as I went through all of those old recipes and found so many that she used to prepare especially for my children and me on holidays and special occasions. She went to great lengths to accommodate me and I’m not sure I ever really appreciated her for all she did for us back then. She may not have been overtly warm and accepting of me, but she showed her love to my family through the preparation of dishes that meant a lot to her when growing up. I want to especially acknowledge the fact that she altered these recipes substituting vegetable broth and shortening for beef broth and lard that many of these originally called for. I plan to share all of those here. However, first I would like to share her very favorite recipe. I always remember her making “Ethelyn’s Brownies” and those of you who know her will remember that this was her favorite staple item to make for both family and social gatherings.

Ethelyn’s Brownies

2 Cups Sugar

½ Cup Cocoa

1 Cup shortening

Pinch of salt

4 eggs

½ Cup Evaporated Milk

1 Cup flour

½ teaspoon vanilla

1 Cup nuts (optional)

Cream first four ingredients together and mix in the rest. Bake in a greased and floured 9x13 inch pan at 350 for 20-30 minutes.

While brownies are in the oven; mix together ½ to ¾ pound of powdered sugar, pinch of salt, 3 T water and ½ stick of melted butter. Mix well and spread over hot brownies.