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.  

Kick Ball

Alma was not very happy to see me this morning when I brought in some pictures for her "life collage". The director (whom I love so much-she is really awesome!!!) took me back to the community room where the residents were playing kickball. Their version of kick ball was sitting in a circle and kicking a giant exercise ball to one another. I waved to her and she looked irritated as she kicked the ball really hard right at me. I kicked it back and went to sit down with her. I asked how she was doing and shesaid, "fine, but I'm not elderly like these people", as she proceeded to praise those around her for doing a "good job" kicking the ball. Next she made me put in writing that I would be back next Wednesday to get her. I did that and added my phone number and she put the paper in her pocket.

Susan (the director) shared with me on the way out that it is a good sign that she didn't just jump up when I came in but I feel like she's pretty angry with me right now (I can't blame her). She said Alma is doing really well and she doesn't usually get such a good reaction from residents who are so high functioning. Thus, I left feeling that she is in good hands and will be well cared for. I did hear from a couple of her friends that are going to go and visit her while she is there. I think that will help a lot.

I probably will wait until she gets back and acclimated before I post anything. Hopefully, her time there will be fairly uneventful and I can just report that she had a great time.

Tantrums and Heartbreak

Alma has begun having temper tantrums. I understand that it is quite normal to revert back to child like behaviors. It is just quite overwhelming to watch a grown woman stomp her feet and scream like a toddler. Especially when it's someone I've always seen as completely in control at all times. Fortunately, while these outbursts seem to come on with little provocation, it is fairly easy to de-escalate and redirect.

Today, I dropped Alma off at the assisted living facilty. It was really hard. It's funny because a friend of hers has suggested for quite some time that Alma may be more comfortable at one of these places other than with family and I understand why she might believe that. At the facility, Alma has her own space and is surrounded by other people who are are afflicted with the same horrible disease. She is not reminded on a daily basis that the people living with her are able to do things she can't. Sadly, today Alma did not agree with her friend. She did not want to be left there and said things like I was "throwing" her away. She was scared, alone and feeling abandoned by everyone in her life. It was terrible. I thought leaving my daughter at college for the first time would be hard. That was nothing compared to seeing the heartbreak in Alma's face as I left. Thankfully, I was able to keep it together until I got out to the parking lot. That's when I had my own meltdown and called Keith and my mother for comfort. I am so grateful at this moment that I am able to feel comforted. Alma doesn't even have that these days.

I know Alma is safe where she is. I really like this place. The staff are wonderful and appear well trained. I know there is nothing I can do to assure her that we will be back other than actually show up and bring her home next week. I wish I could go away knowing that she believed that this is what's going to happen.

A Change in Scenery

Tomorrow, Alma will go into respite at an assisted living facility for one week. It is a beautiful place about a mile from our home. They work specifically with dementia. She is going because we are going out of town for a few days and taking her with us is just not an option; not to mention the fact that we all could use a break from one another. Last week, Alma toured the facility (she has no memory of that) and spent some time with staff and residents while Keith and I did the paperwork. She has heard us talking about our upcoming trip and I think it is making her nervous which is very understandable.

Life here continues to progress with little variation except now she is attending the adult care facility a couple of days a week. I think she is starting to get into a groove there. I have asked that the staff allow her to help with the less able participants and they are doing that. Yesterday, Alma was relieved when I came to pick her up (I got there early because it was a beautiful day) but said, "the old ladies are really sweet and they love me".  Maybe this is finally giving her the sense of self-worth that she has been needing for quite some time.

Alma's attitude continues to vary on a daily basis and that is probably one of my biggest challenges. We all want our in-laws to love and accept us. The thing is that when Alma first came to live with us, she was extrememly easy going and sweet. Nine months later, much of the anger and animosity I felt towards me when I first met Keith is coming out with a vengence. Most likely it's due to a feeling that she's dependent on me. That must be so hard to deal with. She already struggles with trust due to life circumstances and now she has to completly depend on Keith and I. That must be devastating to her. I'm hoping that some space from us will help her feel a little more balanced and in control. However, I realize that it's time for me to stop trying to fix everything for her all the time too. It's wearing me out and I think it's really getting on Alma's nerves.