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!