Holiday Heartbreak

     I started writing this because I've been thinking about the married couples who have holiday blues due to a spouse suffering with Alzheimer's or some kind of dementia. There are a number of couples where my mom lives in a specialized dementia unit. They visit often but are basically separated in their living arrangements as a married couple. It has to be just heartbreaking for them...the holidays...life. It is somewhat for me, and I'm just a daughter. Anyways, I've been thinking about what makes it so hard. I've been thinking about what would help the heartbreak at Christmas. I've just been thinking, thinking, thinking.

    What does make the holidays so hard? Well, I think it's two things. First, we remember. We remember our loved one and their holiday excitement. We remember they did the decorations great. We remember they cooked so much better than we do. (that would be me- lol) We remember they were there with us in all the festivities. We remember their singing in the Christmas choir, their gathering gifts for holiday toy drives, their special family gifts. We remember how they loved their family so well. We remember. We remember. 

   It is also a time when we really miss our loved one who has dementia. I see posts on social media all the time about missing a deceased mom or dad. People respond in sympathy. I want to say, "What about me? My mom is gone too!" But, I can't speak a word because she is still here, but she is just not herself. Not gone but departed from who she was. During the holidays, I think we wish they could go with us to that event and not be confused. We miss them.  We wish they could handle a loud family party and not be stressed and freaked out. We miss them. We wish they still knew what Christmas is about, but they cannot find meaning in their minds any more. We miss them. I think the holidays make us nostalgic anyways. We miss those times we had with them, and we realize we will never have "those" memories ever again. We miss them. We miss them and we love them.

     So, what is my solution to the heartbreak during the holidays when your mom, dad, husband, wife, sister, brother, best friend or any loved one has dementia? In reality, I don't have one. I only have some ideas I am trying. I had lunch today with my mom, and we sang a Christmas carol together. Music has been an activity that soothes my mom. The brain stores musical memories in an area that is undamaged by Alzheimer's. Thus, my mom remembers the words to a lot of songs. I plan to sing a lot of holiday songs with her. It makes me feel good too. In addition, I'm hoping to get a group together to do some caroling throughout her home. I know this will reach more folks like her with the Christmas spirit.

      I also plan to pass down some memories with my family. I will speak more about the holidays when my mom was present in body and mind. Try to share stories and funny memories. Find old photos to show everybody.  Make a special recipe together. We made my mom's crescent cookies a couple of years ago, and she loved them (though not remembering she ever made those cookies). It is also good to do a fun activity that your loved one liked to do during the season too. Remember them. You remember.  You remember for them. 

     Yes, the holiday season can be a time of heartbreak for many people. It can be especially tough for a family who has a loved one with dementia. But, I'm trying to dwell on the love that abounds at Christmas. The love of God and his love for my mom. And be thankful. Thankful I have had her love. Love cannot be erased. Dementia can never steal that from you. Especially at Christmas.

   

   

     

     

Is this Thanksgiving the First Holiday?

     I have to be honest that I have been thinking a lot that my mom is out of the holiday loop. Thanksgiving is tomorrow, and it's a dilemma. While I feel the guilt of not having her over, does it cause her more distress? I have to face it...Mom has progressed in her brain disease. Thankfully, she is still so sweet and knows me.  Does she know my name or just my face? Whatever it is, I am familiar and that is still a good thing.
     When it comes to holidays, I do want her there. But, I keep noticing her agitation with crowds (usually one at my house). Plus, she must feel so misplaced. She seems to want to go "home" right away, but she doesn't quite know where that is. I, of course, have other guests to handle so she must wait. I usually end up leaving my guests, because she is so insistent. I have tried in the past to enlist her help. She is always so willing to help. There are many things she can do. She sure can fold a perfect towel! But, when it comes to the kitchen...I am not sure...Mom is just not her sharpest there. I end up feeling like I scolded her about staying out of the trash!
     So, I am contemplating this Thanksgiving about not having my mom over.  Will she know the difference? No, she does not know that time changes from day to day. She lives in each moment, and some days I envy the peace in that. I can have her over for leftovers, and she will enjoy that moment with the food. I will enjoy being with her any moment I get. It will mean something to us both in a different way. I know I am not the first family member to agonize over this. I know other people have loved ones with dementia that they struggle with issues just like this. I think I have decided I will wait until Thanksgiving Day and will make my final decision. As of now, I feel a peace about not stressing her out with my family and friends when it is really....just one day. I just relish more "moments" with her. That will bring us both to smiles.
   

Assisted Living Facilities (Edited version) and Mom's Journey

     Assisted living facilities are the place to go in your senior plus years. It's the safe spot to keep you out of a skilled nursing facility. Those words "nursing home" were what my dad made me promise to keep him out of. Later, after I really experienced a nursing home for a brief visit, (rehab-it wasn't for me), I completely understood why. They are tough places to have to hang out in. I'm sorry for the folks who have to be there. Sometimes the medical conditions leave no choice. I am sorry for the people who suffer like this.
     Personally, I have had some good and bad experiences at assisted living facilities. I have experienced three places with my parents. I was called out a bit on my previous blog so I am editing it and adding these positive thoughts.
      I have experienced the most WONDERFUL people who worked at an assisted living where my parents were. I did have some really good care. These people worked night and day tirelessly. I felt so much love and concern from them for our family. I felt my folks were safe (code at the front door in and out) and loved. This was such a positive time. They had many family activities. There was lots of community volunteer involvement too. You probably wonder why we moved Mom from there??? It boils down to leadership changes, firing of some of my favorite employees, and lack of care. She was just sleeping all the time and not engaged. We thought she would do more activities at this new spot. So, we gambled she would do well with this move and have a better quality of life. It worked for a while. I have experienced some AMAZING people working in this new place also. It is just I have not had enough time to truly appreciate them. They will know at some point, I do, always, eventually, in the end, show them how much I appreciate them.
     Unfortunately, most assisted livings are NOT secure environments. The new place my mom moved to did not have the code. It was a concern for us. But, Mom had never wandered out alone before.  We were told hall doors are locked, and the front door was covered by a receptionist. But, unfortunately again, that wasn't necessarily true. The hall doors could be pushed right open...no alarm or anything. Mom did take a couple walks out those doors in her confusion. Sadly, it the final walk that was the one that just sent her to the memory care unit. I think this walk was right out the front door in broad daylight. But, no way to document it we are told. It was a beautiful day, the sun was shining on the lake outside, and it was a short walk down the parking lot and off the property. The key word is OFF. It wasn't even 1/8 of a mile I think...but enough. My advice, in this world today,  go with a really secure place...a code at the front door, in and out. In light of recent violent acts, think about that there are drugs and defenseless people in these places...better to be safe than sorry.
     As for medical care, well, it has been hit and miss.  Obviously, it is assisted living. It isn't supposed to be perfect in that area. I must remind myself of that. I had some great help with my dad who had Parkinson's at one facility. It's hard to judge now, because Mom hasn't too many ailments except for her brain disease. They do a really good job of dispensing drugs...if that's all you are looking for.
   In closing, I am entering a new phase now with her lock down life in a memory care unit. It's hard. I did not want this step to ever come. I cannot blame the assisted living world because of my unrealistic expectations. I understand their liability. Plus, they care about her safety. Her freedom might just mean a loss for us all. I just need to focus on Mom. I am losing her still...it really stinks.
   
 
   

Loving Someone with Dementia...It Is Not About You

     When I consider loving my mom and my mother-in-law, I think in my mind I absolutely do. They both have dementia, but they deserve love. They can't help the bad fortune of getting a disease like Alzheimer's. But, what does love look like? For me, it is not about just saying the words...it involves actually showing up.
     Many have said to me, they just cannot stand to visit their demented loved one, it's just too hard for them. They say the loved one repeats constantly or says things that are irrational or even makes up outlandish lies. What I would like to say is...It's Not About You! It is about them. It's about showing them respect for the life they lived. It's about the life they lived showing YOU the love and respect that you deserved, and, let's just be honest, showing you they appreciated you in their lives.
     The biggest thing I hear about ignoring your family member with dementia is, "Well, they will not remember my visit or call anyway." Yes, they can't remember, but now, these are YOUR last memories with this loved one. Of course, if you want to be self-centered and try to excuse your responsibilities, this could be your call. But, I would encourage you to  continue to build your own memories and "live in the moment" with them. It could be YOUR last chance to show them the love they have shown you in the past, remembered or not. And, again, YOU will remember even if they do not.
     Lastly, I must confess it takes a lot to develop this "live in the moment" mindset. We all still want our old loved one back. We long for that person. We grieve for that person we knew. I've been there and done that. It can cause us to be self-centered and think only of ourselves. As I have repeated before...it's not about you...not with a loved one with dementia. Every memory you make now with them you do for them AND for yourself.  The greatest thing is YOU will  remember and there will be no regrets. So, my advice would be is...show up...and show love.
   

   

Grieving with Alzheimer's...it just doesn't happen.

      I just lost my step-dad, Tom Davis, my mom's husband of 34 years, lover, best friend, caregiver after Alzheimer's hit her. He was a second dad to me, but also he was a great friend. He called me his daughter to others. I liked that. We talked a lot, worked together on my mom's care, and lived life together. I think I helped him with her care. When he got sick, I know he appreciated my care for him. His favorite words were, "You do too much." My words back, "I love you, and this is what families do."
     But, what has been the hardest thing for me besides losing a man I really loved? I think it is to not have a mother, his wife,  to grieve with. It has ticked me off so much that she can't grieve him. Yesterday was his favorite holiday, the 4th of July, and she did not mention him once. It's been 9 days since he died, and she does not talk about him at all! This is probably the hardest part of grieving his loss. I know now she cannot process grief anymore. Her brain just does not work the same as mine. When I told her the news of his passing, she never cried and moved on within minutes to other topics. AD has robbed her of her empathy connection with her loved ones. It is such a terrible disease.
     Today, I read a an article with some great ideas on how to handle his death without reminding her a hundred times plus that her husband has died. If you continue to do that, then you give them a new memory each time, and they grieve each time. That is just cruel. Most of us are shocked by the news of a loved ones passing...death is like that no matter what. We cry, we process, and we think and mourn. My mom cannot do this. She can't process it, and cannot remember to mourn. But, the research says to tell her with specific words that she understands ONE time. Then, don't do it again...unless she asks specifically. A tip I found today in my research is to talk about him in the PAST tense. It says to share stories and pics, but always say it was so fun WHEN he was here. I will start that technique tomorrow. I hate this silent stuff that's going on anyways. It's not helping me grieve.
     In closing, I know I said earlier that she didn't mention my dad's name once yesterday on the 4th, but I neglected one occasion. After we spent the day with her, and we took her back to her assisted living, there was a laser show starting in the garden. A worker invited her out to the show as I was saying good bye. She said she was too tired. But, she added, "Is Tom out there?" The worker and I shook our heads no, and she quickly headed down the hall to their room. We told the truth. But, we both felt sorrow for her, for us, for the situation. It just can't be fixed. There is just no grieving with a Alzheimer's victim...you must love them and grieve FOR them..and love them through the loss. Because, even if my mom doesn't know it...it's her huge loss...not mine.
   
   

Holiday Blues Part 2...Grieving the Disease of Alzheimer's

     It's the holidays again and a certain nostalgia comes with that. Memories of old times, celebrations, and especially memories of my "old mom". The mom I used to have is slowly and inevitably fading before my eyes. I am still getting glimpses of "her" when she enjoys the music. She always LOVED the holiday music. She loved singing in the choir too at Christmastime! I often came to her church to hear her special music. Now, she hums to herself, sings a few words and forgets, but still smiles when she listens to performers. I still think she feels joy when she has music in her life.

     Recently, I noticed her decline even more. Mom was always a festive person. RED at Christmas was her color. I brought her a cute red sparkly top to wear to her Christmas ball at the assisted living facility. She wore it last year and loved it. This year I left it for her labeled to wear. I had to be at another event, but I figured she would wear it. She did last year. Instead, I was notified she went to bed at 6 pm (social withdraw?), but I called for help, and my reinforcements got her up. Surprise... when I arrived there I saw that she was dressed in a blue shirt and a black jacket. I was a little shocked when I saw her, but got over it quickly. She still looked nice. It didn't matter about the clothes. I had her hair done that day, and she looked attractive. She enjoyed the music and they even danced half a song! Funny how music really brings out the old woman I knew! Anyhow, her disconnect with Christmas colors, and even the decorations I put in her room, made me sad once again. 

     Today I realized my mom is progressing...it's a progressive disease...there is no stopping the progression. For the first time in a few years, I cried about the unfairness of this stupid disease called Alzheimer's. What set me off? I stopped by her place for a moment today and saw a sweet lady who suffers with early onset of Alzheimer's (like the "Still Alice" movie). She started following me around. She's 61 years old, and it was diagnosed four years ago when she was an elementary school principal! Smart people get this stupid disease and there is no rhyme or reason. Anyhow, she was so confused today, and I thought in my mind, "she's getting worse quickly." I left, but I sobbed in my car for her and for my equally smart mother. I guess it was grief that I hadn't experienced in a while. It was probably a little anger too that this disease can rob people of their personhood...losing who they were.

     So, the holidays are going to be somewhat melancholy now until my mom meets her Creator. Then, she will be whole. She will be able to sing joyously with meaning. She will have a restored brain. She will be my "old mom" again. I look forward to that day.

     

     

What Can You Do If You Live Far Away?

      Many of us think we are moral people. We all think that we love our parents. Even if we live far away, we think a visit or two a year, calls twice a month, all those are sufficient. We are probably blinded. We think because they can't remember maybe it isn't necessary for us to visit. But, did you know, in the recesses of their minds, they still remember some things? Especially YOU! I know this because I have seen it firsthand in cognitive impaired elderly.
     Now comes the hard part, what if your parents are BOTH sick with terrible brain diseases, and you are far away. I don't know what to say to you, because I am the child who lives close by. But, what I really think is you should then make double the amount of visits. I call many in the family to share the stress. Sometimes I call or text for advice. Sometimes I call or text because I feel it's just NOT all my responsibility to handle all these decisions and things. But, sometimes I call just because I have no one else to talk to about our parents. Friends get tired of the same old same old talk about our parents. My family gets tired of me. Shoot, sometimes I get tired of me and feel like I have nothing else to talk about. It gets really old...even for me.
     My challenge for you who live far away is that you do not rely on your sibling living closest to your parents to fill the gap if you have a parent with dementia. Come visit more often and visit your elderly parent or parents. Don't just do what you want to do to help...ask the local sibling how you can help them! This will be the biggest help! For example, a caregiver friend of mine recently wanted to go see her sister and family in California. Her son offered to come and stay with his dad (an invalid) so she could get away on a much needed visit/vacation with family. This is what I am talking about. Sacrifice your vacation or free time for the person caring for your loved one. You do not know what that will mean to them and how much you will be blessed for it!
     What else can you do? You can call often and take an area of responsibility that YOU can do long distance. Perhaps it's something online you can do or a job requested by the local sibling. Remember, 80% of success is just showing up, and you can do that virtually in today's world.
     Lastly, take the calls of the sibling who is local. Share their burdens whether it be medical, financial, or emotional. If they call, always assume it is important, because, quite honestly, they are doing your job as a son/daughter so you should be willing to be there for them.
     But, what if you have no sibling? Then, HIRE SOMEONE! I say this big because it is a must! Even if you have your loved one in an assisted living facility, you will need them checked on. Assisted living facilities have good points and some bad. They definitely will not give the care you would. I will be blogging in the weeks to come on the ups and downs of assisted living facilities. But, believe me, you DO need an extra pair of eyes checking on them to make sure they have quality care where they live.
     In closing, I think back to my mom washing my clothes and reminding me about my manners at dinner...these are things I do now for my mother because my mom can't remember how to do these things. I'm glad I can do that. But, even if you live far away, your mom or dad taught you these same things too....don't ever forget that. Don't forget the time she or he gave you, the trips they missed for you, the trips they went on for you, the sacrifices they made for you. Were they perfect in all this? I am sure NOT, and many of us might find our parents lacking. Does that negate the things they did right at any point in time? No, we cannot let our hurts dictate the care we give them now. It is our responsibility as moral people...not just what we think we are, but we know deep down we should be with our elderly parents. This is the care they deserve...even living far away.