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

A More Positive Mood Leads to Severe Goofiness

The last post is actually from yesterday but I didn't edit it (I use the word "edit" loosly) until this morning. It seems that after a good night's sleep, Alma is in much better spirits as she will not stop laughing and hugging everyone. She really isn't making coherent sentences but whatever her reality is at the moment seems to be a happy one and we are all grateful for that. I will take this opportunity to share some of the funny notions she has been having.

It seems she is having some more hallucinations. They seem to be mostly positve as she cracks herself up in telling us what she sees. She percieves that tissues simply float out of the sky whenever she needs one and the other day Kaiya told me that she said, "the butterflies got me" and proceeded to laugh her head off. I don't know if there actually were butterflies flying around or not. I suppose it really doesn't matter. Before her mood switched yesterday, Kaiya said she was talking about her back hurting and then "cracked herself up" as she said, "I know I have a big butt". Finally, and I hope no one thinks it is raunchy of us to share this here; apparently at Barnes and Noble she saw the name Weiner on a book and thought that was hilarious. I wonder if she recognized the name from recent news stories.

Anyway, it's looking like today is going to be a better day and mostly wanted to share that she is really not always difficult. I feel like we've been sharing all of the yucky stuff so it's fun to think about the silliness that makes things seem so much less serious and way more managable.

She is Breaking My Heart

Witnessing Alma's struggle with dementia feels like heartbreak some days. It feels as if I am repeating myself over and over again (much like Alma does) when I share that I simply cannot wrap my brain around what it is she is experiencing at any given moment. Of course I understand that there is no way for any of us to truly understand what it is Alma is going through. I'm simply stating that on days when she is miserable, it is torturous to see her in so much emotional pain. That being said, my feelings pale in comparison to the inner turmoil that she lives with daily.

This was not a good day for Alma. Unfortunately, my daughter Kaiya was the one to bear the brunt of it. Kaiya and Alma have always been close. She is very patient and kind with her grandmother and we are grateful that she is willing to spend so much time with Alma. Alma was in a great mood until they got to Kaiya’s apartment. Kaiya said she was agitated over seeing her couch and dining room table in the apartment. It must have been so disorienting to see furniture that she recognized in an unfamiliar place. Not to mention the fact that she still holds onto hope that she will go back to her house at some point. That must be terrifying. Kaiya described Alma having a lot of that toddler like behavior (temper tantrums) that we witness when she is unhappy. These behaviors can be scary and unmanageable so I was glad that Kaiya decided to bring her home to more familiar surroundings.  Alma spent the afternoon swinging from severe anger, to uncontrollable sobbing, to sheer elation.

I have found that when I sit with Alma through those extreme mood changes, she appears comforted. Perhaps I am projecting and is the one comforted; knowing that she is not alone at least physically. It is no secret that Keith has expressed concern (he thinks I’m nuts) over me expending too much energy on Alma. I have tried his passive approach and there are some days when I need that. However, now that I get such a big break while she is at the Adult Care Center (it’s going really well by the way), I feel that I have the energy to give.  Even if this doesn’t impact the ultimate outcome here, I do believe that this attentiveness has to increase her quality of life and that is the whole point of her being with us. Whatever the case and as selfish as this may come across, I feel better about caring for her when I am more attentive.

The Leap From Control to Humility

I apologize for the rambling of my last post. Because there has been such a great lapse of time between posts, I seem to have much more to share than if I was posting every couple of days. Therefore, this post will probably be equally, if not more wordy than the previous.

The first thing I want to share is that I took Alma to her doctor and he said that her face looked consistent to what was described by the assisted living facility and she seemed to be healing well. He also made a point to remind me not to get too caught up with demanding documentation from the facility. He states that there aren’t a lot of options around and we don’t want to “burn any bridges”. I will concede to his argument but share here that this line of logic really irritates me and I believe this contributes too many people having a great fear of advocating for themselves or others.

That being said, I will hop off my soap box long enough to acknowledge how touched I am by all of the positive response to this blog. It appears that my goal has been realized and it is nice to know that this has been an effective way to share what is going on with Alma. It’s wonderful to see that Alma truly has so many people who care about her as well. I am grateful for any input and support that we are receiving as a result.

Alma has only been home for a few days and, as usual, it has been a rough transition. Sunday was a really bad day filled with power struggles as we tried to find our groove and get back into some sort of regular routine. Most of our struggles involved hygiene issues and I refuse to bend on those (I won’t get into the gory details surrounding all of that). There were several moments where Alma tried to lash out at me physically and I became increasingly frustrated as the day wore on. It seemed as if we were feeding off of each other’s negative energy. The more she resisted, the more frustrated I got and vice versa. By the end of the day, I was exhausted and fearful that her good mood was gone for good. 

In relation to that, I'm beginning to realize that I may be wound a little too tight for taking Alma out in public. Without getting too far into my own psychoses, I will share that I may have a teeny tiny issue with control and a slight tendency towards self involvement. As a result, my obsessive worrying about what others think may outshine Alma’s emotional well being at times. This became grossly apparent when I took her over to my friend, Kelley’s place to work on some house projects. I thought it would be easy to help Kelley paint her fence and Alma would be content to play with her son, Silas. It seems that this idea was not very well thought out as she was in the midst of wanting to be in control of everything she was involved with (And rightfully so. However, it simply wasn’t practical and I became overly concerned about the way we might be affecting everyone else.).

Yesterday and quite magically her good mood was back and she hasn’t stopped cracking herself up since. Things are back to “normal” as she has been easily going along with whatever we are doing at the moment. It probably doesn’t hurt that I have also made a conscious effort to make light of whatever task is at had and avoid the power struggle through redirecting. As much as I hate to admit this, once again Keith’s “feedback” was pivotal in encouraging shifting my thinking. I suppose we all need redirection sometimes.

Red, Black and Blue

Yesterday, as I picked Alma up from Emeritus, I was reminded why we have chosen to have her live with us versus staying full time at the assisted living facility. Therefore, my frustration and irritation may shine through the layer of sarcasm and "humor" that I try to hide behind most of the time when talking about our lives with Alma (and many other aspects that I choose to leave out of this venue).

Last Friday, while we were camping with friends at a nearby state campground, Keith received a phone call from the nurse at Emeritus at around 5:45 am. The weird thing was that I was dreaming about Alma when I was awoken by his phone ringing. We were told that they had gotten her up (why they are getting her up at such a ridiculous hour if she is sleeping is beyond me) taken her to the living room where they "sat" her in a chair. The nurse said she walked away and heard a loud thump. When she went back in the room, Alma was on the floor, face down. She told us she had a knot on her head and asked whether or not we wanted her to go to urgent care. Keith said we'd call back so that we could discuss it. I called back a few minutes later and questioned Alma's state. The nurse assured me that they would be monitoring her and we opted not to have her go through the upheaval of being taken to the emergency room. It never occurred to us to drive the hour back to Roanoke to check on her ourselves, nor did we consider having Kaiya (who wasn't with us) or a friend check on her. It felt to us that they were calling as part of their procedure and it wasn't that big of a deal.

On Sunday, when we got back, I called to check on her. The nurse said, "Oh yeah, she's doing fine. She has a bruise but she seems fine.” I asked if I needed to come and see her (I try not to go when she is there for respite. It confuses her) and the nurse said, "No, she's fine". I left it at that, knowing that we would be picking her up on Thursday. I also knew that she had friends visiting and figured they would call if it was really bad.

Yesterday morning, Wrenna and I went to pick her up. When I walked in, the director and community director were standing there and told me that it "still looks really bad". When I saw her, I was shocked. Her right side of the face was swollen and her eye was literally "red, black and blue". I also noted her glasses were missing. I tried not to react and gathered her stuff together. I was told her glasses were in the office with her meds because they were damaged. I thought that was strange and asked if she had gone all week without her glasses. "Oh no. They just have them because you are picking her up.", the nurse stated.

As we walked out, I looked at the two administrators and stated "you weren't kidding when you said she looks pretty bad. I wish I had been told that her injuries were this bad." They stated that elderly people bruise a lot and often bruises get worse as they heal. I know nothing of bruising but am confident that my nurse step-mother can shed some light on this piece.

We went home and as I unpacked her stuff, I realized that they had not cleaned her dentures once since she'd been gone. Alma's breath was strong and her dentist has shared that this is common with a lot of plaque build up which occurs when dental hygiene is poor. I also noticed her glasses were bent and there is no way that she had been wearing them all week which is really not okay. Between those issues and her very bruised right side of her face (which included a cut that they did not mention), I was feeling really frustrated. That's when I realized that I should have asked for some sort of discharge summary talking about her care and an included an incident report.

I have been known to react strongly in these situations and did not want to call them while I was this upset so I did the logical thing and took Alma out to Loch Haven Lake, a beautiful private swim club where we spend a lot of our time. She enjoyed her afternoon there. When we got home, my friend, Nancy came over and expressed her concerns over what I relayed to her. I decided at the very least that we should have received some sort of incident report. When I called to ask about it, I was told that they could read it to me but I could not have a copy because it is one of their legal documents. I went on to explain the rest of my concerns and asked if they give out some sort of discharge summary when a resident leaves. I was told they do not and was given "explanations" for each of my concerns. Nonetheless, I am less than satisfied, not exactly sure how to proceed, and question whether or not my expectations are unreasonable.

The bottom line is that I am reminded in a terrible way why we want to keep Alma with us as long as possible. There is no way she can tell us what is going on. She has no idea how she got hurt. She simply can not advocate for herself and I may be tooting my own horn but whatever; she gets excellent care with us. The difficult part is that we are slowly feeling more and more at a loss for alternate care so we can get well needed breaks. We really took for granted the ability to all go out at 8pm for frozen yogurt on a hot summer night or to take off for a long weekend to see family. It's not that Alma is not welcome to come with us. She simply can't travel and her confusion is such that she needs constant attention.  Therefore, we may just have to be resolved to stay close to home for a while. However, things could be much worse and I am grateful that we are able to do this for now.

Still doing well....knock on wood

The summer has been a lot busier than I thought it was going to be so far and that has kept me from sharing how Alma is doing. One reason things have been so hectic is I went back to work at social services part time. Even though it was part time, juggling everyone has been difficult. Thankfully, they have finally hired my replacement and won't need me anymore so I can go back to focusing on Alma and the rest of my family. I have finally realized that I am not as good at multi-tasking as I thought I was.

On Friday, we took Alma back to Emeritus for the rest of her respite stay. We had to purchase a month and we broke it up so we could use it for various events. She will be there close to two weeks so anyone out there reading this who wants to visit is welcome. Even though we will be in town for a lot of that time, we do not plan to visit as it confuses her. However, we have contacted friends and I know that she will have some visitors. My concern is that all of this great settling in that has happened over the last several months will be compromised. However, I do not think it would be wise to take Alma camping with us and I have gotten two good nights of sleep in a row; something that has become rare now that she is up much of the night. Therefore, we are left with few alternatives.

Things have been going really well here with Alma. Honestly, Keith and I are really surprised about that. A couple of months ago when things were getting really rough, we had accepted the fact that we may need to consider moving her into assisted living permanently. We both agreed that we would only have her here as long as it was benefitting her and healthy for our family. We have always understood that it will probably get to be too much at some point. As hard as it will be, I think we will know when that time is here. Fortunately, we can hang on for now and that is the best thing for everyone involved.

However, something has shifted and most of the behaviors I was writing about for several months have ceased. I'm sure I'm over thinking it but it's almost as if her ego has become weak with this disease, enabling her to let go. Sadly, her confusion has increased and her level of functioning is decreased. She needs a lot more supervision and direction. Yet, she is so much happier and appears at peace. She laughs easily and "goes with the flow" better than I have even witnessed. I love that she is experiencing some time with lower inhibitions. Even though she is unable to process this mentally, I can't help but hold onto the thought that she is benefitting emotionally. Alma has always been someone who appears very reserved a guarded. While it is a big price to pay for emotional freedom, I feel certain that we can count this as a very small "upside" to this ridiculous and unpredictable disease.

I attached a like below that I shared a while back. I feel that it is a good sentiment that we all need to be reminded of. Witnessing Alma letting go of inhibitions and being vulnerable (whether it is conscious or not), has been a great eye opener for me. Even if you’ve already watched, please watch this short video again as we all need reminders about the importance of letting our guard down.



http://www.ted.com/talks/brene_brown_on_vulnerability.html

Swim Meets, Ceremonies and Our Busy Lives

The last week has been full of events for our family. Most of these special occasions occurred in the evening and the fact that Alma prefers to go to bed between 4pm and 6pm has made her routine difficult. Because she is such an easy going individual, everything went as planned and we made it to all of our events without incident.

It's amazing how much our lives have changed in the last several months since she has been living with us. We didn't really consider how difficult it would be just going out for dinner after a softball game or simply going to a party. Alma has always stated that she really doesn't care for socializing and we have had to adjust our social lives accordingly. She is easily overwhelmed in a crowd and was especially stressed out at our daughter's eighth grade "graduation" where 158 families were packed in an auditorium designed to seat no more than 400 people. She completely shuts down when faced with too much stimuli and becomes almost immobile. Her brain just doesn't seem to be able to tell her body where to go next. I have no idea what people must perceive as they see us leading a perfectly normal looking adult woman through a crowd like a toddler.

Another challenge is that both of our children are on a swim team together. Part of being on the team is a commitment from parents to volunteer to do various jobs to keep things running smoothly (the only paid workers are coaches). Even though I have expressed to organizers that one of us has to constantly supervise Alma, people just don't seem to understand. They look at her and talk with her and she presents very well. However, the moment she is left alone, it seems that she forgets where she is and many times will become confused and wander. The fact that Keith and I have always been willing to do more than our share at these swim meets has inspired organizers to always want to grab one of us to fill in when there’s a need. Last night was no exception. Keith was busy doing his part as a parent volunteer and I was hanging out with Alma watching my girls swim when a coach grabbed me to help time while one of the scheduled timers went to swim in their heat. I am usually more than happy to help out but when I said I needed to stay with Alma, she gave me an exasperated look and I caved. I took Alma over to sit near Keith and went down to time for what was supposed to be five minutes. After 25 minutes, I explained to my partner that someone was going to have to take over and she responded curtly, “She will be right back! She is swimming!”. The "swimmer" had actually been finished swimming for fifteen minutes and was nowhere in sight. By the time she came back, I was pretty irritated and frustrated and more than likely, it showed. The point here is that it seems I have been presented an opportunity to maintain better boundaries than I have in the past. It seems that my need to do everything for everyone is being overshadowed by the great responsibility that I have signed up for and that is not a bad thing at all. For a long time I have needed to know when to say when and our situation here makes it impossible to avoid. Thus, we have another example of the way that Alma has had a positive impact on our lives by being with us.  I wish I could somehow make her understand this but since I can’t, I will use this opportunity to say thank you, Alma.