Author: Jennifer

If you watch Grey’s Anatomy, you know that Richard had been having some memory issues throughout the last part of the season.  All of the surgeons were madly researching to figure out what could be wrong. Someone suggested that Richard might have Alzheimer’s, but Meredith angrily refused to accept this.  Her mother had died from Alzheimer’s. How could it be that her mentor, Richard, also had it? That could never happen. It was finally discovered that Richard had had a cobalt hip replacement a few years ago and the cobalt was slowly poisoning him.  After surgery to remove and replace the hip, surprise– Richard was cured! He woke up from surgery and was like his old self.

Why am I telling you about Grey’s?  Well, after more than a year and a half of confusion, stress, testing, hospitalizations, and our Mom’s death, it appears that we have to accept the conclusion that Dad has Alzheimer’s.  How can it be? It was our worst fear and now it has come true.  

In September of 2018 we asked Dad’s doctor about his frequent short term memory issues and confusion.  At that time the doctor attributed these things to the extreme stress that Dad was under from being Mom’s sole caregiver.  He was the expert and we were relieved to hear this. We already had enough to stress about.  

Bringing hospice on for Mom during that same month helped but brought its own problems.  The hospice staff could see Dad’s confusion and it was getting harder and harder to hide.   Dad would call us repeatedly not knowing how to give Mom her medications from the med planner. And was he taking his own meds when we weren’t there?  We could never be sure. He still refused to accept additional help in his house. He frequently complained about the hospice staff being in his house and then forgot they had ever been there that day.  He didn’t accept the assistance of the hospice bath aide until perhaps 6-9 months later. We were there whenever we could be but also had to continue with our jobs and families. 

I’ll tell you more soon.  I wish Dad would wake up and like Richard, be his old self.   Well, this isn’t TV, so instead, we are preparing ourselves to help Dad continue on this journey.   Dad gave up everything for Mom and did what no one could have done. I admire what he did but am also sad and angry that perhaps the isolation and constant stress as a caregiver took him away from us just when we thought we’d get him back.  

This book has brought me some comfort and ideas and may be useful: 

It’s been a while since we’ve posted and I wanted to give you an update. Mom is doing okay and is much the same. Some call her the Energizer Bunny. In early February she was sleeping more and didn’t eat or drink much for a few days. Since hospice had told us in the fall that they would not expect Mom to make it to Christmas, we were concerned that this was the end. But, as usual, Mom rallied and came back alert and wanting to eat a lot! She downs her Ensure, pudding, and burgers!

Dad continues to care for Mom full time on his own. We try to provide breaks and to give him time to get out to the store or we shop for him. Hospice provides a nurse who checks on Mom once a week, a monthly visit from a social worker, and a bath aide 3 times per week. The bath aide is so helpful in making sure that Mom’s skin stays intact and healthy.

Mom is able to smile and will hold on if you offer your hand. She has the greatest smile! She spends her days in her hospital bed or chair watching her favorite movies—Mama Mia, Home Alone, Sleepless in Seattle, Ever After, and Grease. My kids have seen Home Alone with her hundreds of times…

Dad makes it a point to try to include Mom in conversations with us and with other visitors. It is so sweet and yet heartbreaking at the same time. I like to think that on some level Mom understands or at least is comforted by this.

This spring marks 10 years since Mom was diagnosed with Alzheimer’s. It has been a long, terrible goodbye. We are doing our best to support Dad and are lucky to have the support of family and friends, but it is a shadow that follows us and has become part of our lives. But, life does go on, and in these ten years we’ve had weddings and grandchildren and also a lot of good times. Everyone has sorrow in their life and I know we are nothing special. We try to remain positive and supportive of Dad. As always, thank you for your prayers and support!

We celebrated Mom’s 69th birthday yesterday. She had pizza and cannolis and laughed.  We have been working with a hospice company since September and the social worker was able to come and celebrate with us. They have been very helpful to us and we are grateful they are on our team.

I found this note in Dad’s office a few weeks ago.  I wondered when Mom had written it. Was it a long time ago when she was perhaps leaving for the weekend? Was it after her diagnosis when she knew she would lose her ability to remember Dad and to communicate with him?   I hope that one day soon there will be a cure for this disease. 

Happy Birthday, Mom.  I love you. 

As my sisters and I have stated previously, we so wish that we had better documented stages and events since Mom’s diagnosis.  This is our advice to you if you are dealing with this disease or something similar. Dad says he doesn’t want to document it– doesn’t want to remember.  

I found some old notes about Mom that give some indication of the progression of her PCA over the years.

July 2013 Mom was incontinent at a 4th of July party, which is the first incident I can remember.    She did not know she had done this, but just seemed annoyed that her pants were all wet. We had to borrow some clothes from a family member and Mom required assistance to change her pants and underwear.  

For a few summers, my boys and I would often pick Mom up and take her with us when we went to parks, the zoo, and swimming.   It kept her busy and gave Dad some time off. As time went on, it became more difficult.

Summer of 2014?

Me: “Do you want to watch a movie?”

Mom: “Do you have anything left?  I don’t think so.”

Me: “I do, let’s go see.”

Mom: “Bullshit!”  

 

She was becoming increasingly agitated.  She didn’t like to be away from Dad and the new situations we were putting her in at restaurants, parks, etc., were too stressful.  

 

Me: “Let’s go to the bathroom.”

Mom: “Why?  In this little one?  It’s little kids’ stuff. This is yours. These are your shorts. Creepy.”

 

This one is memorable– We visited the Magic House with my Aunt and some cousins.  We were having lunch on the outside patio and some chocolate milk spilled onto Mom’s shorts.  She was very angry and gave me a death stare. She said I was rude and asked how many times I was going to do this to her. Mom said she was leaving and tried to do so. My Aunt calmed her down with some Michael Buble songs.  It was quite a scene. We have become used to scenes over the years. We are pros.

Another:

Me: “Mom, let’s go to the bathroom.”

Mom: “I can’t pee in these little shorts you gave me. I don’t like them. They’re full of shit. They’re creepy.”

Mom then stormed out and said “I’m done.”

October 2017  

Mom cannot care for her daily needs.  She can sip from a straw if you hand her the cup.  She can hold some foods and bring them to her mouth.  She will often try to eat the tablecloth or utensil. She can walk but needs help to get in and out of a seated position.  She mostly shuffles. Her feet often look purple and are swollen.

November 2017

Dad and I decided that he would no longer be picking my boys up from school.  He had been picking them up two days per week. It was just getting too difficult to get mom in the car.  She was really just dragging her feet and unable to walk.

December 2017

Mom can’t walk anymore.  Her feet just drag or she goes up on tiptoe when dad lifts her out the wheelchair to change her depends.   She is sleeping a lot more.

Lately, Mom has developed a couple of pressure sores— one on her inner calf and one on her outer thigh/hip.  They seemed to appear overnight and formed large pus filled blisters. The first seemed more alarming and we ended up taking Mom to the ER a few days after Christmas.  It was very difficult to get her out of the house since it’s all just Dad lifting her into the wheelchair and into the car. Of course it was very cold and miserable outside.  My Dad’s sister and her husband cancelled their dinner plans and helped us get to the hospital. They sat with us the entire time. We are so fortunate to have them on this team!  That’s a tip for you– get a team. Luckily, the wound was not infected and home health care has been coming out to monitor and to treat the wounds. The doctor said that these wounds can form easily if the skin breaks down where the bone presses on an object for too long.  In the first case, Mom had been crossing her calves while sitting with her feet elevated and the friction from slightly shaking her legs caused the sore. Something for caregivers to be aware of. We are learning as we go…

March 2018

Right now I’m sitting at Dad’s while he is out at the store.  Mom is watching I Love Lucy and alternates between laughing maniacally, yelling at the TV in annoyance, and grimacing as if she’s in pain.  What’s going on in there?

 

From here on out, I’m going to try to post about changes in Mom’s condition as they happen.  

 

The Alzheimer’s Society in the UK has good information about PCA on their website:

https://www.alzheimers.org.uk/site_search/results/?q=pca

I recently found a folder of information that I collected from the Alzheimer’s Association and other agencies soon after Mom was diagnosed.  This included lists of support groups for family members and adult day services as well as tips and suggestions on selecting services.  Most interesting was the Action Plan formulated during a Care Consultation with an Early Stage Coordinator at the Alzheimer’s Association that my sister mentioned in an earlier post.  It was dated February 22, 2009.  The Action Steps are below:

1. M will discontinue baby sitting on her own.  The family is encouraged to find ways that M can continue to provide care for H in a setting in which she is not alone with him.
2. Due to safety concerns, the stove should be unplugged when M is home alone.
3. Foods that are left for M to eat for lunch or dinner should be put on a separate shelf in the refrigerator or on a shelf with very few other items.  One can expect that the PCA will make it difficult or impossible for M to find meals that are seemingly right in front of her.  Meals on Wheels may be an option, but an adult day program would probably be best.
4. B will look into options for dinners, such as Time for Dinner.
5. The family will explore Adult Day program options.   A list was provided.
6. M will be enrolled in the Let’s Talk program, the Alzheimer’s Association’s telephone-based peer support program for people with memory loss.
7. The family will be given priority in being admitted to Project Esteem, the Alzheimer’s Association’s education/support program for people with early stage dementia and their family members.
8. M will be enrolled in the Medic Alert Safe Return program.  T is encouraged to wear the caregiver bracelet/necklace.  An application was provided.
9. The family and/or M will discuss depression with her physician.  Depression is very common in people who have PCA, and M is exhibiting some signs of depression.
10. M will be enrolled in Lifeline.  An informational brochure was provided.
11. M’s daughters will assist with de-cluttering the home.  This may be best accomplished when M is out of the home.
12. The family will look into purchasing a telephone that will allow M to call people by pushing a button with a photo of the person she wants to call.  These phones are available through medical supply stores and online.
13. The family will work together to develop a schedule of people who can assist/spend time with M.  It would be helpful to have a list of ways people can help.  Other family members, neighbors, friends and colleagues should be enlisted to do whatever they feel they can.
14. Having a young family member with PCA can be very difficult to deal with emotionally.  M’s husband and daughters are encouraged to attend a support group and/or utilize individual counseling.  Lists were provided.

Your family was a pleasure to work with.  You are dealing with a very difficult situation, but you have strengths that other families don’t have.  The above list is longer than most action plans that families get from a Care Consultation.  Please don’t let it overwhelm you.  Items 6 & 7 depend on actions to be taken by staff at the Alzheimer’s Association, and you should expect to hear from us soon.  Outside of those two, I would advise that the safety issues be addressed first (items 1, 2, and 8) and that nutrition should be second.  After that, just gradually work on the action plan as you are able, one or two items at a time.