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.

Inhibitions

Alma’s mood swings continue to perplex us as we have seen a drastic variation with her ups and downs. For the moment, we are monitoring her and I will take her back to her doctor if it continues. That being said, her highs seem to appear with more frequency than her lows. Therefore, I hate to mess with it too much as we are finding her much more agreeable and generally happy. For example; yesterday when I picked her up at day care and asked about her day she told me, "It was good. All I do is make people laugh and laugh” as she was cracking herself up. I told her she should start doing stand up comedy and she said, “I could do that. Everyone loves me”.

I had her quarterly “treatment planning” meeting at the Adult Care Center. We all agree that Alma has adjusted well and seems to really enjoy “working” there. The nurse and director report that Alma is wonderful with the other participants and often spends time talking with and redirecting them when they are having a bad day. They also report that she willingly participates in activities and loves to dance when there is music.

I spoke with my Psychology Advisor from Hollins when I ran into her the other day and asked her about inhibitions. She was very patient with me as she reminded me that it is the frontal lobe of the brain that houses emotions and inhibitions. Even though if I was paying attention in her class I would have already known this, she went on to explain that the “scrambling” in the brain that occurs with Alzheimer’s has a great effect on inhibitions and can result in a lowering of them in patients.

I don’t mean to sound insensitive but I would be lying if I didn’t share that I am grateful for this aspect of the disease. I have shared previously that Alma led her life fairly repressed (that is my humble opinion-others should feel free to interject here). I never saw her dance, laugh without abandon, or talk about the fact that people love her. She was always fairly depressed and this isn’t the first time that I’ve expressed how lovely it is to witness this new found freedom in her. She reminds me of that famous quote…..

“Dance as if no one is watching. Love as though you’ve never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth. “souza

A More Positive Mood Leads to Severe Goofiness

The last post is actually from yesterday but I didn't edit it (I use the word "edit" loosly) until this morning. It seems that after a good night's sleep, Alma is in much better spirits as she will not stop laughing and hugging everyone. She really isn't making coherent sentences but whatever her reality is at the moment seems to be a happy one and we are all grateful for that. I will take this opportunity to share some of the funny notions she has been having.

It seems she is having some more hallucinations. They seem to be mostly positve as she cracks herself up in telling us what she sees. She percieves that tissues simply float out of the sky whenever she needs one and the other day Kaiya told me that she said, "the butterflies got me" and proceeded to laugh her head off. I don't know if there actually were butterflies flying around or not. I suppose it really doesn't matter. Before her mood switched yesterday, Kaiya said she was talking about her back hurting and then "cracked herself up" as she said, "I know I have a big butt". Finally, and I hope no one thinks it is raunchy of us to share this here; apparently at Barnes and Noble she saw the name Weiner on a book and thought that was hilarious. I wonder if she recognized the name from recent news stories.

Anyway, it's looking like today is going to be a better day and mostly wanted to share that she is really not always difficult. I feel like we've been sharing all of the yucky stuff so it's fun to think about the silliness that makes things seem so much less serious and way more managable.

She is Breaking My Heart

Witnessing Alma's struggle with dementia feels like heartbreak some days. It feels as if I am repeating myself over and over again (much like Alma does) when I share that I simply cannot wrap my brain around what it is she is experiencing at any given moment. Of course I understand that there is no way for any of us to truly understand what it is Alma is going through. I'm simply stating that on days when she is miserable, it is torturous to see her in so much emotional pain. That being said, my feelings pale in comparison to the inner turmoil that she lives with daily.

This was not a good day for Alma. Unfortunately, my daughter Kaiya was the one to bear the brunt of it. Kaiya and Alma have always been close. She is very patient and kind with her grandmother and we are grateful that she is willing to spend so much time with Alma. Alma was in a great mood until they got to Kaiya’s apartment. Kaiya said she was agitated over seeing her couch and dining room table in the apartment. It must have been so disorienting to see furniture that she recognized in an unfamiliar place. Not to mention the fact that she still holds onto hope that she will go back to her house at some point. That must be terrifying. Kaiya described Alma having a lot of that toddler like behavior (temper tantrums) that we witness when she is unhappy. These behaviors can be scary and unmanageable so I was glad that Kaiya decided to bring her home to more familiar surroundings.  Alma spent the afternoon swinging from severe anger, to uncontrollable sobbing, to sheer elation.

I have found that when I sit with Alma through those extreme mood changes, she appears comforted. Perhaps I am projecting and is the one comforted; knowing that she is not alone at least physically. It is no secret that Keith has expressed concern (he thinks I’m nuts) over me expending too much energy on Alma. I have tried his passive approach and there are some days when I need that. However, now that I get such a big break while she is at the Adult Care Center (it’s going really well by the way), I feel that I have the energy to give.  Even if this doesn’t impact the ultimate outcome here, I do believe that this attentiveness has to increase her quality of life and that is the whole point of her being with us. Whatever the case and as selfish as this may come across, I feel better about caring for her when I am more attentive.