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