It’s Good to be Home!

Papa might have arrived back at our house in mid September but it took a couple of weeks for him to really come home after his summer vacation. His July vacation turned into an extended two-month stay in California and a quick jaunt to Hawaii vacationing with the West Coast Maroccos’. Traveling can take a lot out of anyone but is extremely difficult for a person with memory loss. Not only does a person experience the anxiety of actual travel, but adjusting into a new environment and then re-acclimating once you arrive home is not easy. Familiarities and routines that may have seemed dull to an outsider are actually a lifeline for people with memory loss. The stability of his day-to-day routines offers a sense of peace, which can be disorienting if broken. He left being an active part of our home life and returned as if he was only here for a temporary visit. In the past month I have realized we may never get back to all of his former routines, but we are constantly working with Papa and reassuring him we will find new ones.

Some things did not change. The day Papa came home he walked directly to his chair, sat down, picked up the remote and said my chair is still good, and I missed my TV. We call Papa’s fancy electric recliner his command center, like his room it is his space entirely and does not change no matter what else is going on. His table that was brought from Arizona is covered with his belongings and we use caution in dusting it to make sure everything is put back in its place. He might offer his seat to another person, but you can sense an anxiety in his voice as he says it. Do you want to sit in my chair really means please sit somewhere else in the room and I will turn on Walker, Texas Ranger for us to watch. That chair is his space, his bubble, his comfort zone. It holds photographs, unread magazines, word search books and his calendar at his fingertips.   He controls the remote and screens every telephone call without stretching more than an arms distance. He is able to sit in that space and make immediate choices that affect both him and everyone else in the room.

Other changes were quickly noticeable. Papa never really said NO before, he has always been game to try new and different experiences and would let us know what he thought afterwards. When he first returned home I was worried with the frequency of the two letter “N” word. He may have mentioned he was tired of walking at times but he never stopped doing things. Now we heard NO, I am old; my feet don’t work right; I can’t walk like I used to. No, I will just wait here. I don’t know if I want to do that or No, I don’t know what I want to eat. Sometimes he would just look at us and shrug his shoulders. I had not realized how much of an issue this really was until he decided to sit in the car instead of going into Costco with Doug his first week back. Costco on a Sunday afternoon is like a playground for Papa, he enjoys the free samples at the end of every aisle or picking up a hotdog or a frozen yogurt on our way out. He did not exercise as much on vacation due to a medical issue, but that has been resolved.  We realized we have to start from scratch to build him up again, to find things he is interested in doing, increase his stamina and encourage him to say YES!  We started slowly walking again, very slowly. But every step he makes is a moment he is up and experiencing life.

I am not sure if Papa had forgotten or if he just didn’t feel comfortable any longer loading his breakfast dishes or bring his dirty clothes to the laundry each morning. He didn’t remember that he used to help me cook dinner every evening or help Doug clean up the kitchen afterwards. His new habit after a meal was to immediately go right back to his chair and ask us when we were going to come sit down with him and watch TV. Where he used to involve himself as the center of our activities he was now worried about getting in the way. But most discouraging for us was noticing he was pausing and waiting for someone to answer for him. We reassured him constantly that indecisiveness is not an option. Papa has a voice and must be an active part in discussions and decisions that affect him. Even if he does not recall each conversation we want him to always be able to freely express his questions, wants and needs and he is never, ever in the way.

I was not prepared for Papa’s slow acclimation back home and was thrilled each time I saw his comfort level expand from his chair to the rest of the house and then to outside activities. We noticed he started feeling more confident after his first ROMEO (Retired Old Men Eating Out) breakfast with the guys. Our weekly Costco runs have improved to where in week two Papa went inside and waited by the snack bar but by week three he watched the Smoothie demonstration for 15 minutes and then wandered over to pick up each and every one of the free samples being offered that day. He loves seeing his friends at church on Sunday, especially when Karen brings him cookies. We went to a car show this past weekend and he looked under every hood and ended up walking over two miles without noticing the distance. We have set out a white board to remind him what his options are for breakfast and lunch or if there is something he can do during the day to keep busy. Last night after running a few errands and then sitting at our neighbors little league game he mentioned I think I want to let my hair grow for a while and It is good to be home. No longer feeling like he is on vacation he has started acting like he lives here again. Yes Papa, we are happy you are home too!

 

9 thoughts on “It’s Good to be Home!”

  1. I was thinkng how hard it it to see your dad, your hero change and become dependent on you, there kids and then it struck me that it is just the way it is. It can just be a fact of life but it is how you view things.
    It reminds me of my favorite quote ” change the way you view things and the things you view will change”

    Mr marocco was and is always one of my heros. I love his gentle heart and youthful excitement. It is nice being his unofficial son

    Sandy, thanks for the blog and giving me the opportunity to reflect

  2. Thanks for the reminder Chris that we all need to “change the way we view things”. Life happens so quickly it is nice to be able to slow down and take a good look around. Wayne, like the rest of the Marocco’s, thinks very highly of you also, and hopes to see you someday soon. Hugs to you and yours. Sandy

  3. It’s good to have you back online, as well Sandy. Good luck on the further adventures of Raising Papa. You are a great nurturer, as well as story teller.

  4. Sandy, just finished reading your most recent article. I can relate to many of the adjustments to having a parent living with you who has ALZ/Dementia to the many changes they are going through. After having my mom w/us for 5+ yrs and then MIL one thing I noticed was that the smallest injury/illness always meant a setback. A further decline to some degree. I learned a lot about the disease, myself and others while being a caregiver. Although my role has changed since Mom is now in a nursing home I continue to be proactive in her care. I learned early in this journey that I had to be her advocate. She could not speak for herself, I had to then and continue to be her voice. There have been many highs and lows, laughter and tears but even knowing what I know now I would go back and do it all over again. I look forward to reading more about your dear Papa.

    1. Mary, thank you so much for your kind thoughts and support in reading my words. Knowing you would go back and do it again encourages us that we are making the right decisions. Your Mom is truly blessed to have a daughter with such a strong voice. 🙂

      1. Thank you, Sandy. Your FIL is also blessed to have you:-) I was at the nursing home this morning when the Hospice nurse came in to check on Mom. I couldn’t stop my tears. Although Mom is doing well it is so very difficult to see her sitting in her wheel chair, hands in her lap and eyes closed. Very quiet and peaceful. She seldom opens her eyes and seldom speaks more than a yes or no. Reflecting back on when I first started caring for Mom in 2006 the one thing I would do differently would be to not try to do everything myself. Allow myself an occasional break. Although early on when Mom was able she did attend an Adult Daycare 2 days a week which she loved, I found myself doing errands etc on those days when I should have taken some time to do something I enjoyed. I have just now gotten back to my reading:-( Mom would not have wanted me to put everything on hold for her and as a caregiver when it becomes 24-7 you quickly burn out. Speaking from one dedicated caregiver to another, please take a moment of each day to take a deep breath, relax and count your blessings<3 Take care

  5. You two are such awesome people. Think how great the world would be with more people like you two….God Bless and Warmest Wishes, Darlene!!!!

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