Alzheimer’s Journey Q & A #2

After sharing another Tuesdays with Mom, I received so many questions so I wanted to do another formal Q & A about our experience with Alzheimer’s Disease. From the bottom of my heart, thank you for all of the kind and loving comments. You all amaze me. I am so grateful for this community. As always, I am no expert in this field and can only share what we are going through. I hope that it is helpful is some small way.

 

How do you help children through this journey? Mine are young and confused.

Great question. Sadly my children have only known Grammy with Alzheimer’s. My daughter was just over two and my son was a baby when we first noticed symptoms. I explain how we first suspected something was wrong here. It absolutely devastates me to think they never got the best of Grammy. It’s heart wrenching. So in some sense we have always had to explain that Grammy gets confused or forgets. Early on that’s all it was. As the disease progressed we had to change our approach and give them coping skills. We would encourage them to talk slowly and not be too loud or crazy. It would agitate mom. We would explain why Grammy and Papa were not coming to baseball games or school events. Or why they had to leave half way through a play there were starring in.

We did not use the term “Alzheimer’s” until shortly before the Walk to End Alzheimer’s two years ago. I remember having the conversation with my, at the time, ten-year old and telling her that Grammy has a progressive disease. It was so emotional. She was so incredibly sad. We’ve tried our best and just prayed their hearts could handle each stage. I will say that the very first Walk to End Alz was extremely emotional for our son. It was the first time he realized how truly major the diagnosis is. He wept hearing someone speak about their own family member.

We give lots of hugs and we focus on the positive. My son went every Thursday with my husband to visit Grammy during the summer. They have a very close bond and he is blessed with immense empathy. Which can be good and bad. At the end of the day we focus on being a team and loving Grammy with our whole hearts. These babies of mine have been through quite a bit for their young ages.

How do you manage the aggressive times in her day?

Fortunately we don’t see the worst of it. Part of the reason we could never care for her in our own home is because we are not equipped to handle those moments. Showering is one of the worst experiences. Most recently I was with my mom when she did not want the podiatrist to look at her feet. I have never seen such anger and aggression. Towards me as well. It ripped my heart out. I am so very thankful for the caregivers who care for her and calm her down. When those moments happen in my presence I never fight it.

One of the best tips I ever received is that you never try to talk them out of it or change their minds. I immediately remove her from the situation and hug her. Hug her so tight. I have no clue what I am doing but have found that love always seems to neutralize the situation. Music and smiling also help. My crows feet are at an all time high because the permanent smile helps make mom feel comfortable. When my dad passed away, the very next day I took care of my mom with a smile on my face. You dig deep and do what you have to do. It’s illogical and painful but it’s all part of this journey.

How does your mom relate to the grandchildren?

Mom lights up around young children and babies. On Target shopping trips she always waves at the babies. As the children have grown she does not interact with them as much but looks at them with such love. She tries to say “how darling” they are. The kids both love her deeply and I am so proud of how they have embraced this stage in her life. Both love going to visit her and try to make conversation that she would enjoy.

How far away is your mom?

It takes us about 45 minutes to get to my mom’s new home. It’s a beautiful drive along the coast and as much as I wish she were closer (as it would be more convenient) the drive helps me to prepare for the day. And the drive home helps me process and decompress before I go back to being mom and wife. As soon as I get home the kids walk in and it’s homework time. My sister feels the same way. It’s an emotional roller coaster and now I realize that the drive is very beneficial. Often times I will listen to podcasts, too.

Do you ever bring your mom to your house?

Unfortunately, no. It’s not that I wouldn’t love to. It is so painful thinking about how she won’t be here with us. If she were right down the street we would try it but the drive is too long for her. Further more we are a bit nervous about how she would be when it came to time to leave. Moving to her new home was a MAJOR adjustment, as you can imagine. She views it as her home now so a part of me doesn’t want to complicate that. It would be too painful to see her not want to go back.

Does your mom every connect with an old song or memory from childhood?

Occasionally. She absolutely did a few years ago. With the progression of the disease it is hard to see any connection. Having said that, I told her that her sister is coming to visit and she lit up! She was so excited and I truly believe she knew who I was talking about. She loves music and sings along to every song. Dancing and singing in the car

How is the care facility your mom is in? Was it hard to choose one?

My dad passed away so suddenly and my sister and I were thrown into an impossible situation. I am eternally grateful to my cousin who came down to stay with my mom while my sister and I did all of the interviews and visits. It’s something you never want to do. It was excruciating. Not to mention we couldn’t even process the loss of my dad. There are so many smaller homes and communities close to us. None of them felt right for mom.

I will say this. It’s easy to choose the RIGHT one. For us it just felt right. Everything about it. The people, the programs, the staff. The Breakfast Club meetings the residents attend to keep their minds sharp. The video cameras. The owner is very well-known in the field and is on site every day. Furthermore her mother in law is a resident. To me, that spoke volumes. The MAJOR drawback was the distance but we couldn’t pick a place based on convenience for us. It needed to be a decision based on mom and her needs. If you have someone who needs to be placed in a community, really look at what your loved one needs. Where will they be taken care of and thrive.

Is everything perfect where she is? No. But nothing compares to having her at home with my dad. Nothing. But we try to look at how my dad gave her such a beautiful life for so long and now she is with a staff who is professionally trained to help her. And love her. I can text any of the staff members at any time during the day and they will send me photos or updates. Very reassuring.

Things to consider:

• Are there video cameras set up?
• What are the meals like? Is it easy for residents to get around?
• How long have the caretakers been doing this?
• Are there weekly training sessions?
• Is there long term care available (can hospice come in to care for later stage patients)?
• Are there nurses on site around the clock? When are the visits from the doctor?
• What is the patient/resident ratio?

*Many people can not afford to place a loved one in a care facility. The opportunity to do this for my mom is in thanks to my dad who planned well for their future and knew this was coming. 

Does it help to show your mom photographs?

It used to. So if you are on this path, absolutely pull out those albums. My kids used to spend hours upon hours going over family albums with her. Now she can barely focus on the phone to look at a photo. Sometimes she reacts and sometimes she is disinterested.

Can you explain what your grief process has been like with your mom’s diagnosis versus the grief with the sudden loss of your dad.

This is a major question and one that I may save for a separate post. I can’t compare the two. Both have been painful and are shaping who we are. I am still trying to process the sudden loss of my dad. I can’t believe he is gone. Sudden loss is horrific. I don’t wish it upon anyone. This is our second time grieving a sudden loss as we lost my brother, too.

We are now approaching ten years of consistent grief with the loss of my mom to this disease. Just when I feel like I am in a good spot, the disease shifts and it’s a new grieving process. This much I know. You can’t take anything for granted and you have to focus on healthy relationships in your life. That is all that matters. I love deeply and fiercely and I know it’s because of all we have been through. I cling to my tribe and am determined to learn as much as I can from these losses. Looking for the lessons is the only thing that gives all of this meaning.

Our St. Louis House . . .dad always hung the best gallery walls

What would you want someone who’d never met your mum before now to know about her?

This might be my all time favorite question. It brought me to tears. This sounds like another post in the making. What is so heart wrenching is that her caregivers never knew the wonderful woman she once was. Insanely intelligent, darling, kind, gentle, honest, insightful, innocent, warm, welcoming. I could go on and on. She was a third grade GATE teacher before we were born. She loved to host and entertain and would create the most gorgeous centerpieces and floral arrangements.

Mom never raised her voice. I came home to warm cookies countless days after school. The world stopped every day at 2:00 so she could watch General Hospital. Mom always looked beautiful.  She and dad were a team and parented as such. Mom made our Halloween costumes and begged me to stay home from school so we could go shopping. She supported every dream we ever had and believed in us. Our parents were supportive beyond measure and loved us deeply. They inspired us to travel and follow our dreams. She served as President of the Assistance League for two terms. Mom was diagnosed just as my dad was retiring and they were to begin traveling and enjoying the fruits of their labors. They both deserved more than this.

Alzheimer’s is a horrible disease and it is far more than just losing one’s memory. I share because I want to shed light on what people are living with and I want to be a resource for any of you who are in the same boat. We need each other.

If I did not answer your question, it is most likely answered in this Q & A or in the FAQ post. I hope and pray that these responses shed some light on this devastating disease or serve as a resource for those of you traveling a similar path.

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