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.

Necklace

Packing up....

Since Alma moved in with us last August, we have been faced with the daunting question of what to do with her home and everything in it. Right after she broke her arm and we realized that she really had no business living alone, we went in and packed up all of her photographs, movies, books and other items that were important to her and brought them over here. We set up a bedroom for her and placed some of her significant "favorite things" in there. She had a couple of other pieces that Keith said had been around for as long as he could remember so we incorporated those along with some of her framed photographs into our home. Our hope was that this would help her feel that our home is now her home too.

It is now nine months later and we hadn't really addressed what to do next. We managed to get most things packed up so we could have the interior painted yet the question loomed, "what are we supposed to do with all of this stuff?". We live in a modest ranch style home and have managed to fill it with our own eclectic collection of junk over the years. There really didn't feel like there was room for more. The good thing is that Alma has always been a very practical person and the only things she collected was movies, photographs and books so once we got those things over to our house, there really wasn't much left; at least that's what we thought.

Once Alma began daycare, I began cleaning out her home. It is such a weird feeling going through someone else’s life. Because this has occurred over a long period of time, I was able to uncover many layers to Alma’s existence. It’s like reading someone’s diary and felt very invasive yet there really was no choice but to keep going. In the beginning, we were simply throwing away expired food (there was so much of that). Our perception of Alma living simply and clutter free was somewhat shattered as we uncovered years of junk mail stuffed into various items from her bookshelves to food boxes in the pantry to every piece of luggage and clothing she owned. She had massive piles of clothes stuffed in closets and dressers. Dirty clothes mixed in with clean clothes and wads of tissue among all of it. I found what I think was once a cake, fuzzy and green inside of a container on top of her refrigerator. It was at this moment that we realized that Alma had been left alone for way too long.

Once we moved Alma’s most important belongings over to our house and we realized that there was really no use or value too much of what was left, we began the task of donating the rest to the Goodwill. I did allow my adult daughter, who was displaced by her grandmother and now living on her own, to get whatever items she needed to set up her first home. She and her roommate got a very old and worn out couch (that Alma asked to get back one day when she was at Kaiya’s house-Kaiya being the sweet and sensitive girl that she is said, “Of course you can have it back, Granny”), a dining room table and chairs circa 1982 complete with white shellacked trim, a bookshelf (our daughter inherited her grandmother’s love of books) and a few other odds and ends. Then Keith discovered that a necklace he made his mom several years ago was missing and stated he needed to go through each piece of clothing before we proceed further. Thank goodness he found that piece eventually and I was able to move on. I felt overwhelmed as I made my weekly visit to the slowly diminishing pile to take car load after car load to the Goodwill (one of my favorite organizations-they do so much for our community).

Finally, one of my best friends came to the rescue and we were able to finish this almost year long task. Nancy, “the tornado”, would be leaving town for the summer in a few days and being the straight forward person that she is decided it was time to make me quit my whining and just do it. As we neared the end we discovered more pictures, articles, and surprisingly journals/diaries that she had kept. While it was extremely sad getting down to these final layers, it was also beautiful to discover what was underneath it all; a woman who cared deeply about so many people in her life but struggled with how to show them.

Note: One thing that is hard here and I don’t want to minimize is that we had to make a lot of decisions on behalf of Alma. We saved many things from her children, grandchildren, brothers, nieces and nephews. We will make sure that they get back to those family members to the best of our ability.

Hanging in there...

As stated previously, if the weather is nice, my posts will be brief and few and far between. It's been so beautiful here in Virginia so we are spending most of our time outside. I do have a laptop but the battery needs to be replaced and it doesn't hold a charge for very long.

Mostly, I wanted to share that Alma has continued to be very easy going these last several weeks and that has made our lives here very easy. Sadly, what perpetuates the good mood appears to be the same elements that affect her cognition. In other words, when she is less lucid, she is more agreeable. When she is more cognizant, it seems as if her awareness creates discord within herself. While many people may feel that it is better for Alma to remain lucid, I believe that when she is less so, her inhibitions decrease and she seems happier. The downside is that her need for physical assistance has become greater. However, I would much rather deal with physical demands that an angry and frustrated person. Even when she has a moment of frustration, she is easy to redirect and responds jovially.

Duh...

Still really busy and the fact that the weather is beautiful will mean that there will be less posts here. That being said, Alma continues to do really well and seems to be in a fairly "peaceful place" at the moment. I did want to quickly share one little moment from today.

I have talked about Alma's fascination with tissues. She has folded tissues everywhere and many times the cleans ones get mixed in with the used ones therefore contaminating all of her tissues (I'm a bit of a germ freak). Over the last couple of weeks, she has been storing her tissues in a dresser drawer with her clothes. I kept cleaning it out and telling ehr not to put them in there. She would tell me "I didn't do it. I'm good." over and over again. I'm not sure why this took me so long but today I realized that instead of arguing, I should move the clothes and just let her stick whatever she wants in there (within reason). All I have to say about this epiphany of mine is "DUH!!!". Oh well, maybe one day soon I'll learn to stop trying to make her conform so much.