Accountability

It is a bit gloomy here in Roanoke and I think Alma and I need a day at home. Yesterday, we both stayed very busy and this morning she seems a bit tired and out of sorts (more than usual).

It has been brought to my attention (and I am grateful for this) that in sharing some of what Alma shares as her "history" may not be accurate. I've attempted to share it as her recollection and not fact but I don't think that is always clear. I confess that I know very little about this disease. I am writing from the perspective of a lay person and nothing more. It is my understanding (thanks to my anonymous friend who points this out) that with dementia, patients may manifest their reality from numerable sources. For example; something seen on television or heard on the news may enter into their reality and their memories. Therefore, I will try and remember to include this disclaimer with any future postings about Alma's history. I will also admit that I may have presented her memories as somewhat factual out of a personal and selfish need to understand why she has always seemed so unhappy. That is unfair to her family and friends and I apologize for any insensitivity.

I really have nothing else to add at this point other than I do really appreciate when family and friends choose to contact me with concerns and/or support. I have found it very helpful and encouraging. While my original intent here was to document Alma's progression it is also about our experiences with all of this. I have found this blog very helpful with keeping me on track, grounded and accountable. I highly encourage anyone who has any thoughts to either e-mail me or post them openly. The benefit to posting in this public setting is that others may benefit from any additional comments.

"You are a Kind meanie weenie"

Just a brief posting to share that I have been upgraded from a "meanie weenie" to a "kind meanie weenie" . Alma laughed and laughed as she decided that this is my new status. It was hilarious!!!!

Dogwoods

I have really been struggling with what a downer these posts are most of the time. I hate that. The reality is Alma has it pretty rough right now and while we do our best to help her feel comfortable, it is rare when she does seem happy.

To the right there are some beautiful pictures of Alma swinging at the park with Kaiya. I was so happy to hear that Alma still has the coordination to do that. It must have made her feel so good to do something for herself without having someone in her face telling her how to do it.

This morning, Alma and I were out early and she was so overjoyed by all of the flowers blooming everywhere. Being outside in the sunshine just transforms her mood and I was so grateful for that. I think we will spend most of the day outside.

I'm a "Meanie Weenie"!

I am a Meanie Weenie. At least that's what I've been told lately. As expected, this week has been pretty rough. Anytime we introduce a change in Alma’s “routine”, she experiences some type of decline.  Her stay at Emeritus was no exception. I’ve already shared that Alma has been expressing some pretty intense anger lately. This morning she threw a tantrum because she couldn’t get into the bathroom (we have a teenage daughter, remember?). She had gone only ten minutes earlier so we knew that she would be fine and it would only be another ten minutes. However, she became very stressed and concerned that she would lose control. Efforts to cam her only made her escalate. As a result, she lashed out at me. It was the second time in two days that she came at me physically.  However, Alma is easy to redirect and hopefully we will continue to be able to manage these episodes in a positive fashion.

The second “incident” happened when Alma decided she wanted to help me by taking out a bag of trash I had collected while cleaning my teenager’s room. It had just stopped raining, the sun was shining and she really wanted to be outside. I was concerned that she would try to wander off but I agreed and asked her to come right back in. I am still holding out hope that we can help her maintain some level of autonomy. Nonetheless, this very intelligent woman saw an opportunity and made a break for it. She bolted right down the street and I had to go after her. I asked her to come in and she stomped her feet as she reluctantly followed me back inside the house. She said, “I was just going to go up the street” and started yelling at me about treating her like a baby. While going for a walk seems like a reasonable request from someone who looks and sounds like a normally functioning adult, she simply can’t handle it. She doesn’t know our address or phone number and that is a great concern to us.

I have heard from a couple of people that Alma’s acting out may be attention seeking behavior. I can see some truth in that. Keith would like for me to back off my constant engaging her and I would like to give her the attention she obviously needs and deserves. The thing is that these angry outbursts come from unmet needs and an inability to express her feelings. I’ve given up on getting her to verbalize those things. Overall, I think what she is looking for is reassurance, validation and empathy. I see this as a great opportunity for my whole family to practice compassion (it isn’t as easy as I make it sound here, believe me). My hope is that even if Alma doesn’t know what’s going on around her, she will feel unconditional support.  The whole purpose here is to keep Alma with us as long as possible. After a week at assisted living, I am more convinced than ever that this is what is best for her.  

Scapegoat

It's a fine balance between the facilitation of caring for someone's safety and well-being and treating someone like a child. This isn't the first time this conflict has been mentioned here and I am sure it won't be the last. The truth of the matter is that Alma needs assistance and reminders regarding her daily care and hygiene and she does not believe this to be the case. Therefore, she is left feeling like she is being treated like a baby. The conflict here only increases as she moves in and out of wanting to be taken care of.  More on that another day.

I bring this up because I waited until last night to address the whole dental hygiene thing (if you missed yesterday’s post, Emeritus failed to make sure Alma cleaned her teeth the entire week she was away). Truth be told, I wanted to have her clean her teeth as soon as we got home and realized that this would only upset her. After dinner, Alma was trying to slip quietly off to bed and I intercepted her so that we could deal with brushing her teeth and denture cleaning. She immediately resisted and later Keith told me this may be why the staff at Emeritus didn't do it (I don't care - this is their job). She ended up getting very angry with me and began a mini tantrum (those are really starting to freak me out). In the end, I had to tell her she had stuff in her teeth and she looked in the mirror, seemed surprised but agreed and apologized to me for getting upset. I felt like I was humiliating her arguing with her over this seemingly silly issue and I hated every minute of it.

This theme translates into many areas of her care and it feels like one big fat double bind. On one hand, she doesn’t know to do these things and hasn’t for quite some time. I won’t allow her to be one of those elderly people (like the ones from the Adult Care Center) who are unkempt and smell bad due to caregiver neglect. I feel like I would be failing her if I did. Before she was afflicted with this horrible disease, Alma was always well put together, meticulous and very clean. On the other hand, I don’t want to make her feel bad about herself or make her think that we all feel she is incompetent. Therefore, I have resigned myself to being the scapegoat in this family.

According to Dictionary.com, a scapegoat is someone who bears the blame or suffers in another’s place (I believe it is originally a Biblical Reference). Okay, so calling myself a scapegoat may be a tad melodramatic. Not to mention the fact that, I am really not suffering for anyone in that it is me that is causing most of the strife in Alma’s life. However, I use this term as a reminder (for me) that Alma may have a great need to blame someone and let out her frustrations. This woman has been dumped on her whole life and who am I to tell her there is spinach from last week stuck in her teeth? Perhaps taking on the role of scapegoat is a necessary process to keep me humble in this role (believe me-my ego often needs to be regularly taken down a peg or two). It just kind of sucks that it’s getting to the point that every time I walk into a room, she cringes.

Home Sweet Home

I picked up Alma fairly early this morning. As soon as we walked out of the front door, Alma opened her arms wide, took a deep breath and said, "Oh, it smells so fresh out here!" as if she had been in prison for the last 10 years. It must have felt that way to her. It was a pretty uneventful move out and I want to add that the staff at Emeritus was amazing. Everyone there was warm, friendly and seemed to genuinely care about the resident's well-being.

 The hardest part of moving her out was finding all of her stuff. It is already an issue that Alma stashes things all over the place. Imagine that times twenty residents. However, the staff helped us track everything down. I do have one tiny complaint about Alma's care. I do not believe that anyone really helped her with hygiene the way we do at home. As soon as she smiled I knew she hadn't brushed her teeth in days and that was confirmed with I saw that her toothbrush was unused and all of the denture tablets I packed were still in there. This may have been something we are responsible for notifying that she needs additional assistance with. Nonetheless, all of her laundry was washed and folded and I greatly appreciate that.

Checking In

I am planning to pick up Alma from the assisted living center first thing tomorrow morning. As promised, I called and checked in with her while I was away. Nonetheless, I realized quickly that this may have been a mistake. I spoke with staff first and was told she was doing really well and adjusting fine (she wasn't asking for us). They also said she had visitors and I am grateful for that. When she got on the phone, she said, “is this the real Lise?’ I’m not really sure what she meant by that unless there has been someone trying to pose as me in my absence. She also asked if I would pick her up soon and that broke my heart. I told her I’d be there Wednesday but I’m sure she has no idea what that means. I am concerned that I might have made things worse and opted not to call her again over the weekend.  

I will share that it has been very nice to have a break. I am struggling with some guilt over that. However, I realize that these breaks are vital to giving good care and I am grateful for the opportunity. I am aware that there are many caretakers out there who either opt out of taking time or are simply unable to do so. Due to the fact that we had to purchase a whole month of respite, I will be using all four weeks over the next couple of months so I can travel a bit this summer. I suppose I will have to work through some of that guilt as a part of that.