This is our journey through cancer and Alzheimer's. Barb had a rare cancer and passed away March 1, 2012. She did not loose her fight with cancer, she won and laughed in its face till her last breath. She lived valiantly!. Bruce, her loving husband of 50 years and 5 months, has Alzheimer's. I am one of their children, Kurt, and I write this blog not only for them - but for you. Thank you for taking this journey with us and we hope you will feel free to leave comments and thoughts.
Thursday, April 11, 2013
A Long Overdo Update
It was exactly one month ago today that Dad had a fainting/dizzy episode that landed him in the hospital for five days, and then rehab for almost four weeks (one year to the day of Mom's memorial service, too). The conclusion: Dad's blood pressure drops quickly and randomly and he experiences moments of great fatigue and weakness. This is one of the many unfortunate side effects of advanced dementia In rehab he was fairly successful in learning how to use the walker however, the concept of 'having' to use it is one he continues to fight. I tell him daily that he needs to have it on walks outside of his room because it will help prevent a fall. I also remind him that another fall could seriously put him in the hospital for a very long time. I hope we can continue to reinforce the concept of the walker whenever he leaves his room. I tell him its for safety - not that he's old - but just for safety.
The nurses and staff at Heritage Village have been outstanding. Today some of the nurses and staff expressed sadness in sending Dad home but joy that he is able to leave. They have enjoyed his kindness and smile and he's a pretty low-maintenance patient.
Much paperwork has passed between my hands and others as we ready for his transfer to assisted living. He seems to be OK with this next step and I'm confident that we used enough of his personal items to furnish his room, that he will feel he's in a familiar environment. I spoke in length with his Doctor on the phone and then went to his office to sign papers and arrange to get Dad a Medic Alert bracelet that states 'dementia patient' and 'DNR (do not resuscitate). That was Dad's wish before he was declared incompetent by physicians and my role as activated power of attorney for healthcare is to carry that out. The paperwork is on file at the doctors' office as well as the assisted living facility and the local hospitals. Dad signed them during his time of competence several years ago and I have updated and confirmed his wishes with my signature. I am completely confident that the medical staff and care givers around him are properly updated on his situation and that the paperwork is up to date, proper, and most importantly, down to the letter as far as Dad's wishes are concerned.
Dad's memory right now is not good. He still remembers distant memories but even those are slowly fading. He remembers Mom and the three kids. He says he still talks to Mom every day and in his new place there are pictures of them all over the place.
My conversations with him are trying and tiring but I maintain a smile and pretend that whatever we talk about is brand new information - because for him, it is. The conversations usually make a full circle right now about every ten minutes. It's hard, I'll be honest with you all. I get emotionally tired but I hear his voice and watch his eyes and he truly believes he is saying things for the first time. So we go with that. He deserves the utmost of respect and it would not be respectful to call him on it or become irritated. I watch my tone of voice and body language very carefully. Any hint of negative reaction from listeners may result in him shutting down and not talking. We absolutely don't want that to happen.
Dad enjoys another card!
He still loves the cards and letters. My dear friend Sher has been sending him about a card a day with different photographs of nature and wildlife. He adores them although each time I introduce him to her when a card arrives. We will place all these cards in a photo album that he can go through a lot. He loves looking at them and the cards of everyone else. Uncle Keith sends him photos with small stories on them. He adores those and they are all hung on a bulletin board for him right now. something we will arrange at his new place very soon. Thank you again for sending him a card and/or letter. If you do not have his current address please let me know and I'm happy to email it to you. When it comes time for you to think to yourself, "I've sent him enough he's probably tired of getting them" remember this: every single day is an absolutely new day for Dad. He has absolutely no recollection of the events of yesterday or the past few months. He is not sure if he's been where he is for one day or one year - the important thing to remember is this: today is the most important day for Dad. your participation in his day means the world to him.
There are four levels of care in the place he's going. He is on level one right now. Required is assistance while bathing and supervised walks outside. He will have a shower time twice a week but won't have someone actually bathing him. They will putter around his room and bathroom while he bathes in case he needs assistance. The nurse in charge will work with me the first week to make sure I'm up to date on the procedures and safety protocols of showering and bathing and then, once passed, they will allow me to be the person to be nearby. Hopefully that will make Dad much more comfortable with showering. Better a trusted family member than a stranger-nurse in the room!
A well -deserved dish of ice cream!
He will eat in the dining room which is set up much like a regular dining room with about 8 nice, wooden, round dining tables. They said they will seat him at a table with the other man who is there. dad will make the second guy, surrounded by 14 women! He will be in heaven, for sure. They make homemade meals there everyday, nothing ordered out or brought in by a 'factory'. Dad will still be able to get his coffee in the morning and his beloved bowl of ice cream in the afternoon (some battles are no longer battles when you get to this stage in life!).
Outings will be limited for Dad in the beginning. He has not done well on outings for actually a few months. He gets very confused when we return to home, not knowing if he's been gone a few hours or a few days/weeks. i will keep up with daily visits for a few weeks and then, for both his benefit and my emotional health, I will dwindle the visits to every other day. He still remembers how to dial my phone number on his cell phone and I am only 15-20 minutes away from his place.
As this disease continues to rob Dad of his memory, we anticipate down the road that Dad will begin loosing some of his abilities to care for himself and, eventually, he will begin loosing muscle and motor controls and function. They are prepared for multiple levels of care at Luther Manor. When the time comes they also contract with Horizon Hospice, the same hospice that was so gracious with us while Mom made the transition from this life to life eternal. Horizon agrees to come to Luther Manor so we do not need to bring Dad to the hospice. Of course, depending on the situation and circumstances at the time, our decision will be appropriate. Meanwhile he is in good hands. Terri has seen the place and approves. Her daughter Nikki has worked in assisted living facilities and agrees that this is one of the best around. She said she would love to work in a place like Luther Manor and that if she ever had to go in a home like this, this is where she would like to be. The small, intimate nature of Luther Manor at River Oaks (the full name of the place) seems to fit Dad perfectly.
Kurt and Dad, fire department tour, April 2013
This is not the end of Dad's story by any stretch. Each new day will continue to bring challenges and rewards. Last weeks' adventure at the local fire station will be re-visited many times over and next week a large editorial will appear in the local paper highlighting Dad's life achievements and the special way a local fire department decided to honor him. I'm so proud of him. He continues to make people around him smile. Everyone adores him - he is kind, generous, and still opens doors for the ladies and says thank you and please all the time. He is the perfect gentleman and he makes friends very quickly.
Dad on a fire truck ride!
Before I close I will share a funny story with you all. some have read this before but its so cute it needs repeating. A few days ago I was putting things together in Dad's new place and one elderly lady asked if the new guy is good looking. I told her I look like him but add about 30 years. She looked me up and down and said, "you'll do in a pinch!"...a second lady close by took my hand and said, "we don't care about his looks, how's his 401K and his pension plan!" TRUE STORY. Oh yeah - we'll have to keep our eyes on these ladies for sure!