The Lonely Road

The other night, as my husband and I were laying in bed, I asked him the question:

"If I end up with dementia, would you take care of me or would you put me in a facility?"

There have been many thoughts and observations that led up to me asking him that question. I've been thinking about my mom a lot, reflecting on the last few years with her, wondering if I may inherit the same fate. Sometimes it feels like she is disappearing from the world; like she's the invisible woman that only I and my close family can see. Every now and then this discussion comes up with my dad as we reflect on those who have and have not been there for us in this journey.

The fact about dementia is that it is a very lonely disease. It isn't like other terminal illnesses where you are given an approximate amount of time to tie up your affairs and say your good-byes (and doing so while still in your right mind). Rather, it is unknown and most often very long and drawn out. In the beginning, people are shocked with the diagnosis; they express their love and condolences. But as time wears on, people (understandably) go about their lives and lose interest. The person with dementia is left alone to lose their mind and memories and abilities, day by lonely day.

We've been very fortunate to have many family and friends step up to comfort us and help ease to our burden throughout this journey. When Mom was initially diagnosed, there were many who expressed their condolences. We had offers of caregiving help-physically and even financially. But there's a huge difference between talk and action. With as many people who have reached out to us, there are equally as many who have rarely acknowledged the situation. People that my mom have worked with or served with at church; women, who at one time or another my mom has considered to be very close and dear friends, who have never once visited her since her diagnosis or even call to ask how she's doing (the same goes for my dad). There are family members as well who rarely, and some who never, stop by; family members who my mom was very close to, who never pick up the phone to call my dad and ask how she, or even how HE, is doing.

Life goes on, and it has to. Everyone has their own struggles to face in life. We understand that, but it's lonely all the same. And I would be lying if I didn't say that it's been hurtful that certain people haven't called or visited over the past 5 years. When we think of the life that Mom led, loving and serving and giving to others, it's sad to feel as if she's been forgotten about that easily; that maybe she didn't mean as much to people as they meant to her.

And maybe that's the not the way it really is. Maybe she's not really forgotten. Everyone handles grief differently. Sometimes people don't know what to say or how to react. Many may feel that she doesn't know them anyway, so there is little purpose in visiting (though the visits didn't happen even when she did still remember certain friends and family members). I've been very transparent in sharing our journey so maybe some of these people read my blog, unbeknownst to me, and feel that they already know what's going on. It's a hard situation all the way around.

A couple of years ago, I had somebody close to me go over a couple of times to sit with mom. She was friends with mom but I wouldn't say she was super close to her; she was much closer to me. After the second time, she told me, "I just can't handle seeing your mom like this, so I won't be going over anymore." That comment left me feeling so angry and hurt and alone. As hard as she claims it was for her, imagine what the pain must be for my dad to see his sweetheart decline every single day. Imagine how hard it is for my mom's children to watch this disease take her over and transform her into a stranger; how hard it is for us to change roles as we bathe her, change her, care for her; how hard it is for our kids to lose their grandma. I don't think this person intended to hurt my feelings at all. But since that day I can't recall a time she's asked how my mom is doing (though I occasionally volunteer information) and our relationship hasn't been the same. I feel abandoned. The avoidance from friends and family members does cause pain; not just to me, but to my dad as well.

I don't write this post to guilt or shame anyone, but rather to help people to understand what every dementia caregiver goes through. There is a common theme in many of my online support groups and that is the feeling of being alone, especially for the main caregiver (most often the spouse; in this situation, my dad). I share this for those who may wonder how you can help ease someone's burden; I give the following suggestions:

1. Don't avoid. This is our reality EVERY. SINGLE. DAY. Please don't pretend like it's not happening. Don't be afraid to ask how someone is doing-both the person affected and the caregiver. I always feel really grateful when people ask how my dad is doing because they recognize that this is just as much a struggle (if not more) for him than for my mom. You don't have to talk about it every single time you interact with the person, but don't be afraid to check in now and then. You aren't going to offend or upset a caregiver by talking about it!
2. Absolutely, do not say or offer anything that you don't mean! We've all heard it: "Let me know if there's anything I can do to help" and then when called upon for help, there's no response. I think that's worse than not saying or doing anything at all. It's happened to every caregiver out there. If you are serious about wanting to help, it's more helpful to give specific suggestions of what you can do. Sometimes you may not know what to do, and that's okay! Just don't offer anything if there is no intention of following through.
3. Give a phone call or a visit now and then. Even a note or a card in the mail can brighten up a caregiver's day. I know it seems intimidating, but it is appreciated and shows that you really care. I know it means a lot to my dad when people have dropped off treats or sent cards, or even called to check in on how they're both doing. Additionally, keep in mind that people who care for loved ones at home have little social outlets. It's nice, sometimes, to have interaction with other people. It can get really lonely.
4. Be mindful that caregiving is a 24/7 job. A lot of times, people will call and ask my dad for help with something, and he's not one to say no. He always makes time to help people. And truthfully I think sometimes he likes it because it gives him another outlet to interact with people. But...people may not give thought that in order for him to go out with them or to go over and help, that means he has to have a caregiver at home that he is paying (or one of us has to come over and sit with mom). It's nice for a caregiver to be able to get out; maybe help provide a way so that they can get out now and then!
5. Don't be afraid to recognize special days: birthdays, anniversaries, etc. I have heard from many caregivers who feel sad when people close to them fail to recognize these special days. Perhaps they feel it will upset them to say anything; not bringing it up doesn't make us forget about that day. Be mindful that holidays are going to feel especially sad and lonely, especially while still caregiving as the person is still here to care for. We are grieving for the loss of someone who is still alive and unless you've been through this, it's difficult to describe the many emotions that go with it.

Before I end this post, and because I don't want to come off as ungrateful, I want to be sure to recognize that we have been luckier than so many other caregivers out there. Though it hurts with the people who have seemingly deserted us, there are so many who have been and continue to be here for us and for that we are sincerely grateful. Sometimes it's even been strangers, or friends who never even knew my mom before dementia, who have shown us incredible support! Those people have truly lightened the load and I can't tell you how much we love you for being there for us.

Eventful Weekend

We had quite an eventful day last Sunday. Okay, the picture of the firetruck may be over dramatic, but I got your attention ;) (The firetruck DID make an appearance).

Let me start by reminding you of Mom's obsession with her jewelry. She no longer attempts make-up, but she still makes sure her earrings are in her ears and her wedding ring is on her finger. Except that it's not really her wedding ring. She dropped her real wedding ring in the driveway a couple of years ago (thankfully we found it and locked it away!) Since then, we've put a "cheap" ring on her finger. It was an adjustable flower ring that belonged to her mother. Over time, the rhinestones have all fallen out and the metal has discolored. Over the summer, when Dad went on a cruise with his sisters, he picked out a silver, stainless steel ring for mom to wear as her wedding ring. I thought the gesture was SO sweet; Mom was just content to have a ring on her finger and it fit her perfectly.

Fast forward a few months...Mom has been dealing with some swelling, mostly in her ankles. I bathe her 3 times a week and I haven't noticed any problem with her ring. On occasion, I will move it around and make sure everything is okay but apparently it's been a while since I've checked. Our caregiver texted me on Saturday to say that she noticed Mom's finger looked irritated underneath the ring and that it appeared to be stuck. The next day (Sunday), while family gathered for dinner, I looked at Mom's finger. Her finger was so swollen that I couldn't move the ring at all. My Aunt Peggy and I got some olive oil and attempted to remove the ring from her finger. But...it wouldn't come off. We tried and tried and could only manage to move it just beneath her knuckle. With the ring slightly moved, we were able to get a good look at the red ring that her metal one had left behind on her skin. It looked raw and very sore; the ring needed to come off and soon. But now we had a big problem: how do we get this ring off of Mom's finger?? The ring was so tight that we couldn't get a tool under there ourselves to cut it off. And with her lack of comprehension, many things could go wrong.

As we were all brainstorming, I wondered if we could call a non-emergency line and get a paramedic to come out and cut it off. After some discussion, my husband called the fire department who said that they could, in fact, come over and cut the ring off her finger with a special tool. Twenty minutes later, three firemen walked through the living room door and attempted to get the ring off Mom's finger as my dad, Aunt Peggy and I held Mom still. Mom nervously tapped her foot while she giggled; Aunt Peggy thinks she was giggling because of the firemen, but Mom giggles nervously when people are in her space and trying to hold her still. But who knows, maybe she was checking them out. Ha ha.

Did I mention that her ring was stainless steel? Note to self, stainless steel is almost indestructible! Her tough ring was barely scratched at the attempts of their special tool. Apparently it only works on soft metals. They gave it their best and then decided that this tool was not cut for the job. They had a saw that would work, but decided it was too risky because of her agitation and inability to hold still. They told us to take her into Urgent Care or the ER where they had the ability to sedate her through the process. I hate ER with a passion (none of us wanted to go that route) so I called Urgent Care first. They told me that they didn't have the right tools to do it, so we were left with no choice but to take her to the ER.

By that time, my Aunt Sharon (who is an ICU nurse) had arrived on scene for family dinner. Before taking her to the ER, we decided to give it one last try. Aunt Sharon held Mom's hand in a bowl of ice water, hoping to get the swelling down. Unfortunately, that made no difference and it was more difficult to try and keep her hand in the water. So...off to the ER we went. We sat Mom inbetween my dad and me in the backseat of Aunt Sharon's car while we made the drive across town. Aunt Sharon and Aunt Peggy came for moral support.

At the ER, my dad went to check Mom in, while Aunt Peggy went to get a wheelchair and I held onto Mom in the backseat of the car. We use the wheelchair for doctor's visits not because she can't walk, but because she can't follow instruction and she will either refuse to walk or walk in the wrong direction. It's easier to sit her down and push her where we need to go. We transitioned Mom to the wheelchair and to make a very long and boring story short, we waited in the ER for about an hour and a half before she was finally seen by the doctor. My Aunts took turns pushing her around the waiting room in her wheelchair for the entire waiting time in an effort to keep her from getting out of the chair and running away. Thankfully, it worked and we were able to keep Mom contained and somewhat comfortable.

Once Mom was called back to a room, they would only allow my dad to back with her, despite our protests. We tried to tell them that they would need a second person to hold her but they were insistent that only one person go back. Quite frankly, they were rude and uncompassionate. Of course once they got her back in the room, they sent one nurse out to get another to hold her arm (why didn't they come back for one of us??) Medical attention, particularly ER and hospital visits are extremely frustrating when dealing with dementia because most of the medical professionals really don't know what they're dealing with; at least, that's been our experience. At any rate, the report from my dad was that they were able to get the ring cut off without any sedation, but her ring was so strong that it broke their tool! They had to make two cuts and remove a piece, and then pull the ring apart. Luckily, there were no signs of infection on her finger, although it did bleed a little and was left very raw and red. Poor Mom. We've been keeping Neosporin on it and it seems to be healing well.

Needless to say, it was a big day for Mom, who usually spends quiet days at home or sitting on her chair in the front yard. She threw up in the car on the way home (she tends to get car sick and it was probably too much excitement for her) but she slept pretty good that night!

I didn't hear this firsthand from my dad (so hopefully I'm accurate in relaying this) but my Aunt told me something that my dad told her after everything was over. He told her that while they were back in the waiting room, Dad was sitting in front of Mom, holding her hand. She looked at him and leaned forward and gave him a kiss. What a sweet moment that must have been for my dad. It makes me tear up just thinking about it. Affection has been long gone but every now and then (very, very rarely), Mom will lean over and give Dad a kiss. It reminds me that even when all seems lost, she is still somewhere in there. My dad is her rock and the love of her life. Even though she can't express it in words, I know that she is aware of his love and support for her. I just know it!

Thanksgiving 2016

Another Thanksgiving has come and gone. Mom hasn't known what holidays are for a couple of years now. I only get to spend every other year with my family for Thanksgiving; the odd years are spent with my in-laws and the even years are with my side of the family. It's been quite a while since I've enjoyed a real Thanksgiving with my mom. This morning, a picture popped up in my facebook memories. It was a picture taken of Mom and me during Thanksgiving, 2010. While looking at that picture, I realized that this was the last real Thanksgiving I had with mom.

In 2010, we knew that something was wrong with her, but we didn't know quite what it was (despite several appointments with doctors and specialists). Mom had come to Thanksgiving at my house that year and was finicky over the food. My Uncle was making the turkey the "wrong way" (he was smoking it on the BBQ), she was having aversions to a lot of the foods and she messed up on making her pies. I thought it strange at the time that her pumpkin pie had turned out runny; mom had always been a master in the kitchen. I remember being slightly embarrassed and confused with the odd way Mom was behaving. I feel a little ashamed of that now, but at the time I had no idea what was going on.

In hindsight, I wish I would've known that that would be our last real Thanksgiving with her. Rather than being annoyed or embarrassed, I would have embraced every moment of the holiday. Thinking about it now bring tears to my eyes. I miss my mom so much.

By the next Thanksgiving turn (2012) she'd received her diagnosis and even though she still somewhat understood what Thanksgiving was, she didn't participate in any of the preparations and she didn't eat any of the food. Thanksgiving 2014 came and went and she didn't even know what Thanksgiving was. This time, I was a little more mentally prepared in that I had no expectations of jogging her memory in getting her to remember what the holiday is. Those days are long gone. Everyday seems to mesh into the next for her; there are no special days anymore.

Thanksgiving dinner was held at my parent's house, as are all holidays nowadays due to the fact that we can't get Mom to leave the house and be comfortable anywhere else. My house is a little more ideal for family gatherings, with a big backyard and plenty of space for the kids to run around and play. Dad's house is a little tighter quarters, but, it is what it is and we make the best of it. There were two highlights of this Thanksgiving. One was that Mom came into the kitchen to make her peanut butter and jelly sandwich right during dinner time, which meant that we had two minutes of her sitting down at the table with the family during our feast! It might sound silly, but it was such a sweet thing to have her sit with us, if only but for a moment. The second highlight was getting this snapshot of Mom with some of her grandkids. Not all the grandkids were there that day, but I was happy to get this picture of her with the kids.

I enjoyed spending time with my family, but it's still really hard without Mom. I often wonder if it's harder having her there physically. It's a painful reminder of all that we are missing. I almost made it through the entire day without any tears ;)

Check back tomorrow for another post about the eventful weekend that followed Thanksgiving!!