February 28, 2016
I was walking out of my house to my car today and a woman talking a walk called to me, “Excuse me, I haven’t seen Elaine in a long time, is she alright?” I had never seen this woman before so I was surprised she was asking after my Mom. She was taking a leisurely walk and so I could tell she lives in the neighborhood. As we conversed and I explained what was going on with my Mom, she seemed genuinely upset. Through our conversation she told me she graduated High School with my Mom and whenever they saw each other (often as my Mom was taking a walk) they would talk, sometimes for hours. It was clear that she knew my Mom well.
After we spoke, I wondered how many other people were missing my Mom. People who I don’t know about but she came across often. A cashier at a local supermarket, her old work friends, other church goers at the 7am mass. My mother always was a shy person who did not feel comfortable in group social situations. She wouldn’t join a pottery class on her own or play cards with strangers, her relationships were more organic. A smile and a wave to someone she went to school with, a nice word to the gas attendant, a laugh with a fast food employee.
I think people often just think about their relationships with their relative who has Alzheimer’s and what they are missing. But each person in the world affects more than their family members. Other peripheral people who are part of my Mom’s routines have missed her. They have wondered why she doesn’t buy her morning coffee from them or at another store pickup the newspaper. Most don’t even know her name, they just know she has not been around. Its impossible for me to know how many people are missing my Mom. Today I was taught that there are people I don’t even know about that do.
I am not alone. My Mom is not alone. Sometimes I have to remind myself of that. Alzheimer’s can be very isolating for the patient and the caregiver. I spend a good portion of my day worrying about my mom. Is she eating enough, is she eating to much, is she getting the right nutrition? On and on the worries go.
No one else can know how it feels. They try to empathize but unless they go through it with their parent they don’t truly know. I try to empathize with how isolated my mother must feel, but I truly don’t know. That is one reason the disease Alzheimer’s is so isolating.
I lie in bed at night, fearing to sleep to heavily. I need one eye open and one ear listening for Mom. The lack of good sleep reeks havoc on my body and brain. Its like having a baby all over again. Except, I am alone. I have some support. The truth being alone is almost impossible to avoid. No one can truly put themselves in my shoes. They may help a few hours here or there but they are not me. They are not responsible at level I am for my mother.
November 28, 2015
Puppies and dogs are wonderful companions. At first they can be a lot of work, but as the grow they become easier. Last year we added Rosie to our crew. Rosie is a mix of King Charles Cavalier and Poodle. Boy does she have a lot of energy. It took Rooney (our King Charles Cavalier and Cocker Spaniel mix) a little bit of time to adjust. Now they are inseparable.
The thing that amazes me about dogs is how sensitive they are. They easily pick up on humans emotions. I see it with Rooney and Rosie. When my mother is more anxious then usual, one of the dogs (usually Rooney) will sit next to her to calm her. Even Rosie in her puppy craziness will let my mom pet her. The power of touch can change a persons mood. Its so wonderful how therapy dogs go to hospitals and nursing homes. At my children’s colleges during finals and midterms puppies are brought on campus to help relieve students stress.
For the times that I’ve been frustrated with the dogs (maybe they got into the garbage) it quickly goes away when I see the positive effect on my Mom. She talks about my dogs more then my children. They bring her peace and comfort when her mind doesn’t. Nothing sweeter then puppy love.
November 3, 2015
Usually at dinner time or when you just put your feet up the doorbell rings. Who can it be, a friend? A relative? No, its a stranger trying to sell you something. As frustrating as it is, I do understand that its someones job. However it can cause issues when they knock on the door of a person with Alzheimer’s disease.
A stranger coming to the door can invoke fear, anxiety or worse over friendliness. What if you Mom invites this stranger into the house. What if she gives him money? We can’t take that risk. We have gotten a No Solicitors sign for the door (from the town) but that doesn’t always stop people from knocking. We can’t lock the door from the inside for safety reasons. But for the times that Mom may be on her own an unplanned knock one of things that I worry about.
I have decided that I am going to put a note on the door. A note that would hopefully deter anyone from knocking on the door. My note will read, “Caution do not knock on the door. The baby is ill and taking a nap. If you wake the colicky stomach virus ridden baby you will be responsible for taking care of baby. That includes cleaning up any mess that the wonderful stomach virus will inflict on the baby.” I think this note will do the trick ; )
Before my mother got ill, the word progress had positive connotations with me. When I get my children’s progress report from school, its to show me how far they have come or where they need to go. When my son has progressed in his soccer skills, it refers to him getting better. Progress or progression in Alzheimer’s and FTD do not provide comfort to the patient or those around them. It has almost the opposite effect.
My Moms disease has progressed slowly and intermittently over the years.It was so slow in the beginning, that we did not even realize she wasn’t well. Since January, we have seen a steady progression in my Mom and the disease. Words are harder to find, she has had a few (far between) tolieting accidents, her personal hygiene is starting to wane. I try not to look at it as a day by day, but rather week to week. By doing so, I can judge a greater amount of time to see if there has been a difference. We keep hoping for a plateau. A place for my Mom to sit for a while, before more things go. In six months, we have not had one plateau. To say it’s disappointing would be an understatement.
Who is thinking about their Holiday photos in August? Me of course! Late summer early fall is the perfect time to have you holiday portraits done. Why? Because the weather is perfect. Everyone still has a touch of the summer sun left on their skin and there are many choices of outdoor back drops. So book today and check one thing off your holiday list early!
Deep summer is when laziness finds respectability. ~ Sam Keen
I love the summer vibe. Sand between the toes, late night sun, the clock seems to have flexibility. There is always things to be done yet in summer there is no rush. To bad that wasn’t true for autumn, winter and spring. Right now I will be hope my laziness finds respectability
In this “new” world of never-ending selfie taking, there seems to be no shortage in photos. This is a good thing. Maybe not the duck faces, but the capturing the moment. Think of the old photos that you have. When you see them, they bring you back to a time, stir up memories. How often do we hear something like “This was the Easter when I was 6, and I’m wearing my favorite dress!”, or “do you remember that night, this was taken at John’s house”. Even better, “wow, you look a lot like your Grandpa when he was your age.”
Without photos, we would depend on memory. Human memory, which gets fuzzy with time. Photos can bridge time, photos can fill in the gaps, photos can bring smiles to our faces. So keep snapping away, but maybe leave the duck face at home.
You know when you get a new piece of furniture and you have to put it together? Many brands give you detailed written instructions. You follow each step, refer back to photos and written word until eventually your furniture is built! That is not what happens when you get a piece of furniture at Ikea. There is a manual included, but its like playing Pictionary. Black line drawn pictures for each part, with arrows telling you which way to go. You have to figure out through trial an error that its the short plastic screw that goes in, not the longer metal screw. It usually takes longer than expected to put a simple piece of furniture together. While doing so, there is plenty of frustration to go around. That sums up Alzheimer’s.
Many days I feel like I am playing Pictionary or Charades with my Mom. She is searching for words and I am calling out (often in my head), “blanket, bed, … ” to fill in the blank. There is no manual that tells me what steps to take next, which “screw” is the right one. Sometimes full pages of the “manual” are missing. We have to guess and guess and through trial and error still have a 50/50 shot that we get it right. Each time there is something to put together with my Mom it’s a different “manual.” You never know what you are going to get with Mom and you need manuals or guidance through out the day. So for the person “building” the furniture it is frustrating, for the person assisting with the build it’s devastating to never get it put together the way it once was.
As much as I search for answers to the daily and ever changing questions I have with my Mom, I can’t find them. I realize that it is in part due to the fact that there is not one answer. An answer that would fit today, may not next week or may not even fit the same from morning to night. For now, I will keep searching for answers and hope to be able to put it together.
Surprise! That what was yelled at me when I walked through my girlfriends door last week. She asked me to come over and help move a carpet for her. The last thing I was expecting was a surprise birthday party! (See pictures and you will know that statement is true!)
My daughters had planned this event and asked my friend if she would allow her house to be used. It was the first time in my life that I was surprised. The first time that a party was just for me. All of the parties and showers were for me and my baby, me and my husband, I even shared a sweet 16 with a friend!
The people who were invited, were all people I love in my life. They bring positivity, kindness, love and they are family to me. Such a beautiful job was done by my girlfriend and my family. I was reminded once again how truly blessed I am!