Valentine's Day

It's been more than a month since I posted on Alma’s blog. I was hoping that I would be continuing to update everyone on what's going on with Alma but it looks like blog posts will be on a more intermittent schedule now that she is no longer living in our home. While much of my focus has been on getting Alma settled at Pheasant Ridge, I have also been keeping busy trying to get our house back in order and looking for a new job.

Things are going fairly well where Alma is. I have a few concerns and am working on getting those straightened out as quickly as possible. The director that was there when we first moved Alma in has been replaced. Due to the fact that there is so much flux, there are many inconsistencies and that concerns me. One big issue for me is that they keep the resident’s rooms locked at all times. I have a key but Alma has no way to go in and out of her room freely. The only thing that concerns me about that is I do not feel confident that the three nurses on staff can safely unlock the door to thirty resident’s rooms and evacuate all of them in the case of an emergency. I met with the new director today and while she was a very pleasant person, she really had no answer for me other than “we keep the resident’s rooms locked for the privacy and protection of each resident”. It just really concerns me that they do not seem to have a cohesive plan for evacuation. Fortunately, I am a big enough nerd to look up the state standards and regulations for assisted living facilities in Virginia and learned that these procedures should be in place. However, there was no reference to residents who are incapable of self evacuation and locks on doors.

I know I’m being pretty picky and I’m okay with that. Alma pays a lot of money to be there and I believe that she should have the best care possible. I am trying to be aware of my tendency for bulldozing and am working on being mindful of the way I come across. Therefore, I am working on finding a balance between that and getting Alma’s needs met in the best way possible.

On a more positive note; I learned today that Alma might have a little romance growing at Pheasant Ridge with one of the four male residents. The new director shared with me that he went over to her the other night and asked her to go walking with him. Then they held hands while making several laps around the building. Afterwards, the director overheard them discussing the possibility of farming together. The whole thing is especially sweet considering Valentines Day is tomorrow. When I asked Alma what she would like for Valentines Day, she replied, “Oh, I really need some of those really good brownies”. I’ll take those to her tomorrow.In the meantime, check out these sweet pictures from Alma's first couple of months at Pheasant Ridge. 

Alma Settling In

I just wanted to quickly let everyone know that Alma is settling in beautifully at Pheasant Ridge. She has been there only two weeks but seems more at peace than I've seen her in a while.

It is my intention to keep this blog going for a while but I'm sure posts will be less frequent. If you are interested in being updated on Alma's progress, I recommend that you enter your e-mail (right below) if you already haven't to get notification when there is a new post.

Here is a picture I took of Alma yesterday when I went to see her. I think it is a good representation of her attitude. She just seems happy and we are all so relieved.

More later...

Settling In

Everything moved faster than expected and we moved Alma into Pheasant Ridge last Thursday. The truth is that I hadn’t had a full nights sleep in over a month and it was getting to the point that I was becoming pretty ineffective as a caregiver.  I mentioned that Alma was having a hard time finding her room even during the day. Nights were much worse in that we were all trying to sleep and she would wander around the house. Upon hearing her, I would get up and help her back to bed. However, once she is awake, she doesn’t stay in bed long and just as I would drift off again, I would hear her footsteps going back down the hall.

Keith questioned why I couldn’t simply let her wander. We had alarms on the door, left lights on all over the house, put child safety locks on everything and baby gates up in the kitchen. This was not just another way to micro manage Alma, I explained. The thing is that those methods of accident prevention are fallible and as long as I knew she was unsupervised, I was concerned not only for her safety, but everyone’s safety. I have learned the hard way over the last year and a half that no one can predict the behavior of someone who has limitations due to brain function. Alma is fairly compliant and unassuming. Most of the time, she is just pacing around. However, sometimes it seems that a switch gets flipped and she will exhibit some very strange and unsafe behaviors like walking out in traffic. Therefore, knowing she was up at night was keeping me up too. Finally and when he witnessed Alma hopping over the gate to the kitchen, Keith agreed.

Therefore, by the time we had completed all required paperwork, we were ready to go ahead and move her in quickly. I talked to staff on Tuesday and it was set that she would move in Thursday. As soon as I hung up the phone, I began to doubt the decision. The director of memory care referred to Alma as “high functioning” and I began to question whether or not we were jumping the gun.  The tears began flowing in a constant stream as the guilt settled in. Thankfully, I managed to cry it out before the move on Thursday. I knew the better my mood that day, the more at ease Alma would be. I was especially relieved when Kaiya told us she was available to help and wanted to be there as well. Kaiya is very calm and has a soothing effect on Alma so I knew that she would be a great support person that day.

Things could not have gone any better. We arrived at Pheasant Ridge at 9am and by noon, she was all checked in. By the time we left, she had eaten lunch and was hanging out in the common room with some new friends. I had forgotten a few things and when I went back that afternoon, she was laughing with some of the other ladies.  As happy as she was to see me, she didn’t seem at all distressed when I left. I have been out there several times over the last week. We’ve taken her on a couple of outings and she has not gotten upset once or asked to come home with me. Yesterday I took her out to say goodbye to the staff at Adult Care and to give them some holiday treats (she never had a chance to say goodbye and the staff had become attached) and when we were done, I told her I was taking her home. When we pulled up she said, “This is a nice place” and seemed pretty happy about going back inside.  

I have decided to keep this blog going for now. It’s a nice way for me to update everyone and finding things to say has never been a problem for me. I strongly encourage anyone interested to go and visit Alma. Keith is going to make some cards with her new address on it and we will send those out after the New Year.  I posted a link to Pheasant Ridge below and you can find the information about location and visitation there as well.

I hope everyone has a wonderful holiday!

Christmas

Major Changes

I realize my posts are becoming less frequent. Part of it is simply the fact that I rarely get a moment to sit quietly and write without distraction. More prevalent is the fact that writing the things that are currently going on with Alma has become quite emotional and depressing for me. While the point of this blog is to inform those interested about how Alma is dealing with the disease, there has been a part of me that has wanted to protect those of you closer to Alma from hearing about how difficult things have become. I realize it is not my place to try and protect friends and family. Therefore, I plan to give a more realistic account of the way things are going.

Sadly, we have come to a place where we have had to realize that I can no longer meet Alma’s needs in our home. It has been agonizing facing the reality that I do not possess the skills for taking care of someone in the later stages of this horrendous disease. It’s ironic to me that I was dreading so many things about bringing Alma into our home and now I feel physically ill at the thought of no longer having her with us.

I suppose I’ve known this day was near after the incident about a month ago where she had the unusual “blood pressure drop” in our bathroom and I simply had no idea how to respond. Since then, Alma has had a rapid decline and now is almost completely incontinent. Currently, I am up several times a night, to help her to the bathroom or to clean up what mess was made when I wasn’t looking.  It’s not that I have a problem helping her with these things. It’s more about my skill level and the fact that I’m physically and emotionally exhausted paired with the toll it has taken on our household.

We do not have a date set but Keith and I agree that there is no reason to delay Alma’s move. Originally, we were planning to try Pheasant Ridge Retirement Community (http://www.pheasantridgeslc.com/ ) through a respite stay after Christmas. However, due to the fact that the decline has happened so rapidly, we have met with the staff and have chosen to move her in as soon as we can get the paperwork completed. We just do not see the point in having her go back and forth to see if it’s a “good fit” when small changes can send things spiraling  very quickly. I would also like the opportunity to transition her in before things get much worse. In other words, I’m guessing that the longer we wait, the more difficult her adjustment period might become.

As I’ve shared our decision with local friends and family, I have had several people remind me that I have not “failed her” and it’s okay to admit when things get to be too much. The staff from Pheasant Ridge reminded me that “it’s okay to ask for help”. I agree with all of these reminders but it is nice to be validated. While I am very sad to see Alma at this stage and I’m heartbroken at the fact that I could no longer meet her needs so she could stay home with her family, I feel very strongly that it is time for her to have good (and alert and hopefully more patient) care around the clock. I can not state enough how much it has meant for me to have Alma live with us. I feel blessed to have had the opportunity to get to know and appreciate what a sweet and loving person she is. I believe that we have all benefitted greatly from having her with us.

The next couple of weeks are going to be tough for all of us. I’m not sure how much I will be posting after this. I will probably write about the move and will try to post occasional updates. However, I would like to end on a positive note and add another recipe from Alma’s collection that some of you may want for the Holidays. The following was one of her favorites to prepare for Christmas.

Lemon Squares

2 T lemon juice

1 cup flour

½ cup softened butter

¼ cup powdered sugar

¼ teas salt

2 eggs

1 cup sugar1/2 teas baking powder

2 T flour

Mix together flour, butter, and powdered sugar

Press into bottom of greased 8x8 pan

Bake 20 minutes at 350

Beat remaining ingredients until light and fluffy

Pour over hot crust

Bake for an additional 25 minutes

On behalf of our entire family, I want to say how much it has meant to all of us to have so much love and support from so many people. We truly feel blessed to have such wonderful friends and family. Thank you and have a wonderful holiday.

The Importance of Connection

Disclaimer: Recently, I have been spending time reflecting on my experience so this post is more about me than Alma.  

Since I’ve been home with Alma, I have spent much of my time cleaning, organizing and getting her house ready to sell.  After that huge task was complete, I thought that I would feel bored being home but the truth is I’ve stayed very busy. As a matter of fact, in many ways I feel like I’m working harder than when I was working my forty plus hour a week job as a social worker. That hit me the other day when I was thinking that a Child Protective Services job sounded more appealing than being home (a possible sign of burn out).  That being said, there are many things that I enjoy about being home.  Not to mention the fact that I honestly do like spending time with Alma. We have fun together going on little “field trips” up to Mill Mountain or to get apples. While there are many things about being Alma’s “caretaker” that are exhausting, I truly have felt grateful just to get the opportunity to connect with her on a deeper level.

More than one time, I’ve expressed that I never felt very comfortable around Alma. She was always quiet and reserved. Instead of simply respecting that aspect of her personality, I made a gross assumption that her quiet nature was a sign that she didn’t like me. I believe I have even used the words “she hates me” on several occasions. It didn’t help that several times she stated that she found me aggressive and pushy “but in a good way”.  I’m one of those annoying people who take everything personally so not only did I find those comments to be unsettling, but I found the silence between the comments to be much more difficult to deal with.  As a result, I filled in the gaps by assuming that whatever she wasn’t saying must be much worse.

Therefore, knowing for the last ten years that I would more than likely be faced with caring for someone who loathed me was not a happy thought. I dreaded that day and there were many milestones along the way that indicated that the time was coming when I would have to get over myself long enough to give this person the respect and care she deserved.  I will never forget the day when Dr. Kamardi at the Center for Healthy Aging decided to have Alma’s license revoked. I remember asking, “How is she supposed to get anywhere?” and he looked at me and simply stated, “You will drive her” and I felt like the rug was being ripped out from under me. I remember arguing with Keith over the fact that we had our children so young and just as we are getting to a place of independence; we will have to take care of Alma. I was resentful and angry about the entire situation. Not only was this intelligent and independent woman going to lose her ability to think and reason, I was going to be the one she would associate with these losses.  My poor ego couldn’t handle it. Nonetheless, we moved forward and little by little things got worse. Then there was that day in August when she broke her arm and I knew the day I had dreaded so much had come. I was petrified of what the future would be like. 

Nothing has been the way I thought it would be two years ago. While tiring in many ways, things could not have gone more smoothly. That’s not even the point here. If we hadn’t made the adjustments in our lives to have Alma with us, I would have never understood how much more there is to her personality than shy. The thing is that while I was making all of those assumptions about her reserved and quiet nature, I failed to make a connection with her.  It breaks my heart to watch Alma go through the slow deterioration of her brain (as I write this, she has come down the hall twice because she can’t find her room in our very small home).  This is one of the worst things I have ever witnessed.  However, through this process and even with her decreased brain function, I have made that connection with her. My only regret is that I didn’t reach out for that much sooner. Regrets aren’t very productive so I choose to focus on the fact that I am grateful that I have the opportunity to connect with Alma now.

One of the ways that I have found a nice way to connect with Alma’s life is by continuing to go through her families recipes. My sister in-law, Cassandra shared with me recently that it has been meaningful to Keith’s brother Kenny to have some of the dishes that his mother made for him so long ago. They live in Texas and it was so nice to feel that they were able to make a connection over the miles this way. Over the weekend, I started a project to record all of these recipes. My hope is to create some kind of family cookbook to share. For now and in the spirit of Thanksgiving, I will share some more recipes with you now.  The one below is one of those dishes that Alma made for every holiday.  I had mentioned in an earlier post that in her quiet way, I believe she prepared many of these vegetarian recipes as a way to connect with me. I just didn’t realize that at the time.

Corn Pudding

1 can whole corn drained

1 can cream corn

2 eggs

½ cup sugar

¾ stick butter

½ cup flour

½ cup milk

Salt and pepper

Bake at 350 for 15-30 minutes

Have a Happy Thanksgiving.

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”

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.

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