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.


   

Mother's Day and Appreciating the Mom You Have

     It's Mother's Day tomorrow, and the thought of it brings bittersweet thoughts. Both my mom and mother-in-law are so deep in their dementia now that the day means nothing to them. The day could pass them by, and it would not cross their minds. There is no finding the perfect gift for them, planning time to be with them, honoring them with our appreciation. It just isn't even needed, desired, or important to them. But, we want to be with them because it is important to us! We want to show them love and appreciation. We just can't expect it to be something meaningful to them. It can only mean something to us.
     I talked to a sweet 81year old lady yesterday, an old friend of my parents. She has her mind and wit so Mother's Day means something to her. She has two daughters, one very far away and one only two hours away. Yet, she will be alone on Mother's Day. Her daughter close by stays too busy to come and visit. Her daughter's husband won't let her come stay over. So she is a widow all alone on Mother's Day. She said the daughters sent her some roses. It was nice, but she would rather be with them. She sounded a little teary when she said she might make herself a pot roast and a pecan pie tomorrow. She wasn't kidding either. I was thinking, "Wow, a mom who still knows how to cook." I was jealous of these two daughters and angry at them. They still have a mom with her mind and intellect intact yet they don't even appreciate it! It made me really sad for this lady, but sad for all of us with moms who struggle with dementia.
   In closing, if you read my blog this is my admonition to appreciate the mom you have. If she has memory struggles, love her through them. It is often sad, but many days there are "moments" of joy just being able to hug them and remember old times. They like to hear about the things they used to be able to do...the great deviled eggs they made or that perfect homemade cheese cake everyone loved. For those of you who have a mom who does NOT have any memory issues...SEIZE THE DAY. Don't waste any moments with them and don't let them sit home alone on Mother's Day. If you live far away, call a old friend to have your mom over. Better yet, plan a vacation to visit her. Appreciate and show your mom while she still can acknowledge it, and it brings meaning to her life. One thing I have realized in this life, we can't undo the past and decisions we made. But, we have THIS day and the future to make better ones. Loving and appreciating our moms while they are still on this earth is one of the best choices we can make!

The Caregiver Torch Has Been Passed

     I guess it's hard for me to come to grips with, but I must now consider myself "the Caregiver". I was handed this torch suddenly last summer when the original caregiver fell ill. My step-dad, Tom, did an amazing job for years and years taking care of a wife with dementia, and it took a toll on his health. At 80 years of age, he was diagnosed with a progressive brain disease too, Parkinson's. Now, nine months into it,  I'm caring for two parents with brain issues. It is very sad. Mom with her dementia lacks the ability to really feel empathy for his health problems. She doesn't see how to help him with his physical problems. She just doesn't have a sensitivity chip anymore. He is frustrated, feels lousy, and gets weary of her continual replay of questions. It is very depressing to watch the two of them sometimes.

     I must admit I have questioned why I got the chosen pick for this job. Why me? I know I have a merciful nature, but, quite honestly, I don't always handle stress so well. Plus, I am menopausal...enough said on that one. So, many days I just wake up and the question again resounds in my head, WHY ME? People say to me how blessed I am to have the job of caring for them. Well, I can tell you in a perfect world where I am a perfect person I might, just might, always have perfect thoughts like that. But, again, being honest, some days I just want some relief from it all. Their health issues, financial woes, bills, and daily needs consume my thoughts and time. Running away has crossed my mind on more than one occasion. But, I know I cannot leave them and am trapped here. I feel like such a selfish person when I think thoughts like this. I berate myself and am miserable until I turn a corner away from the thoughts. Of course, I can rationally say to myself, "This season will not last forever. I will be so sad when they pass away." I can say it truthfully too. But, my heart sometimes isn't big enough for my mental capacity to be a weak human being, letting my emotions control me. Oh, to be that perfect person I referred to earlier!

     I did learn early on after receiving the torch, I NEEDED HELP! I needed it and asked for it. I was close to a breakdown, and I knew I would be no good to them that way. So, a friend gave me the name of a wonderful lady, Jenny, to help me. She has been a 74 year old angel from heaven. She helps with appointments that we must juggle for them, runs errands, volunteers at their assisted living home and is an extra set of eyes there (this is a must if your elderly are in an ALF). Jenny gives me great advice and emotional support. Just like it says in Ecclesiastes 4:9,"Two are better than one, because they have a good return for their labor." Jenny and I are a good caregiving team, and we are working together to improve my parents' quality of life. She has also become a family friend to them and all of us. I can't tell you enough about how her help has made this "season" more bearable, more joyful, more everything...

   So, the moral of this story is, that if you get passed the "Caregiver Torch", then run WITH it and not away from it. Let yourself feel the grief of it all and cut yourself a break when emotions overwhelm. Be true to yourself, and ASK for help if you need it. There are no successful lone rangers. Two are truly better than one.