A friend shared with me “Bringing the Gamma Back” which is a podcast from Radiolab. It shares the impact of light frequency treatment in mice. Those mice with with both early cognitive issues and full-blown Alzheimer’s positively responded to the light treatments. The amount of plaques reduced and they seemed to regain prior memories — all from just a one hour exposure to light pulsing at 40 beats per second.
Unfortunately, positive outcomes in mice rarely translates to humans. The reports from MIT seem to still be discussing the mice trials. I would have hoped given the zero risk of the treatment that someone might have started human testing.
Heck, after listening to the story, I am interested in figuring out how to set this up at home. Who’s brain couldn’t use a little cleaning?
It’s encouraging to see the vast array of new research, and I hope soon, something will land on a real way to slay the beast. Hoped.
Last week, my Mom’s back pain was so bad that she declined to get out of bed. She has complained of back pain on and off for a year, but it was never more than a minor complaint and one that she refused to take any medication to treat when offered. After the basic testing, it was determined to be related to her osteoporosis.
She has a general aversion to taking pills, always has. In order to make sure she got the dementia medication that had calmed her paranoia (Risperdal), we eliminated several vitamins she was taking. After this change, the nurses were able to consistently ensure she got her medication.
Over the past few months I have noticed her shoulders rounding and her gait changing. She still loved to walk and was often seen roaming the halls of the Assisted Living community.
The second day of her pain, my Mom started to cry out when they would help her get to the bathroom. They gave her a minor dose of a pain medication, but within a day, she became almost catatonic. The next evening, they called to ask me if I would like her to go to the Emergency Room. I declined since there was really nothing the hospital could do to help my Mom and I know a change of scenery would only be worsen her condition. They switched the pain medication and only administered it after she exhibited symptoms of pain. Unfortunately, my Mom was now unable to move or speak. She also was refusing food.
The change was so dramatic my first question was if they had over-medicated my Mom. They switched the medication and there was no change in my Mom by day 2 except that she was no longer crying in pain when they moved her. She could only be moved by wheelchair and was unable to even hold a drink to her lips. When I asked her questions, she mouthed soundless words to me.
I follow-up with the head nurse on day 5 and after checking on my Mom they suggest we call hospice and have initiated a consult. I still am not sure if this is a “pain medication hangover” or if my Mom’s dementia has suddenly taken her down to nothing so quickly. Bewildered.
A key topic of interest to me is the idea that agitated dementia patients feel pain, but can’t verbalize it. I hope you will share any recent studies or news stories you have found on this topic. The most recent one I found is from The National Dementia Support Program in Australia.
As I was cleaning out some old boxes of papers, I found a booklet on “Managing Alzheimer’s” that was given to my parent’s in 2010. We didn’t know of my father’s diagnosis until a neurologist and psychologist both reported their findings to us in 2012.
In 2010, my siblings and I all noticed a change in my Dad’s normal jovial behavior. He was solemn and talked very little. My brother and sister took him to his primary care provider who referred a local visiting medical service. A nurse visited him in his home every week for six weeks. She called me to say he and my Mom seemed to be doing alright, but told me she left some papers that might help. I remember my Mom commenting on her visits – my parents had no idea why she was visiting them in their home. I’m sure I ended up with the booklet when my Mom was complaining about her last visit.
My Dad’s primary care doctor never alluded to any suspicion of Alzheimer’s — and I visited her with him at least twice after this referral. Looking back, I realize how many signs we had been given. It wouldn’t have changed the journey because my parent’s never acknowledged any issues and we worked to manage through while maintaining their dignity and independence.
Yesterday, as I was going through the mail to pay bills, I found a card from the Alzheimer’s Association that said my Dad had been donating since 2011. My parents habit was to review the charities each January and make one annual donation. In January, 2011, they added the Alzheimer’s Association to their list. My Dad never discussed any medical issues with any of us kids. We inserted ourselves into his care. The only time he pushed back was when the psychologist was going to deliver the results of his neurological testing. He knew he did poorly, he told me so.
He only once mentioned the word Alzheimer’s to me, it was in the final month of his life. As we were in the waiting room to see the first oral surgeon about the lesion on his tongue — he pointed to an advertisement in the magazine and asked me if I knew anyone with Alzheimer’s.
I reflect back on the woman who visited my parents and who left these papers. She already knew and helped provide us with information using kid-gloves. It was all that would have been accepted. Professional Care Givers are a rare breed with skills that continue to elude me. My hope is that we all remember to thank them as often as we can. Reflected & Appreciated.
For almost two months my mom has perseverated on the absence of her gold necklace. My mom hides her valuables and then forgets where she puts them. She jokes about it and acknowledges she needs to stop doing this, but she cannot help herself.
Almost 30 years ago, my mom bought a 2 foot long 22k gold chain. It’s beautiful. Around Thanksgiving she mentioned it was lost. We looked all over their apartment at the retirement community and then made more than 3 trips to the town house to specifically look for the gold chain. When my sister visited, she had helped my mom search in both places.
Right before the Christmas holidays, I introduced them to the graduate student who has been helping me shuttle my children as well as help me with my business. My parents adored her and allowed her to drive them to the town house. That only lasted two days before they rejected the idea of “outside” help.
After the holidays, my mom would call daily asking me to take her to the town house to look for the gold chain. She had no recollection of visiting to look for it any of the numbered visits. I started to leave notes on doors after we had looked through a room but she would angrily tear them off and begin the hunt anew.
I am sympathetic to my mom’s angst, but she was wearing me out. On many of the trips, my mom would share her own frustration in having two places. She lost her wallet, purse, calendar and now her gold chain, and having two places to look was exasperating.
We are approaching the one-year anniversary when the psychologist recommended they move into the retirement community full-time. How much easier their life would if they had accepted that recommendation. Exhausted.
For the past few weeks my mom has given me a variety of reasons to return to their town house:
Mom: “Dad needs to do work in his office.”
Kay: “The boys moved dad’s office to the apartment two months ago. Should we make sure the printer has enough ink?”
Mom: “I need to go get my winter coats.”
Kay: “I just saw some coats in the entry closet. Let’s see if your winter coat is in there.”
We have made these trips, gathered the items they requested, but they don’t remember.
Sometimes, my mom would ask if I would take them to their town house to stay overnight, I then share with my mom that “Dad has been diagnosed with Alzheimer’s and I’m worried about you having to help him alone.”
Telling her this seems to immediately sink in. She knows he has good days and bad days. To almost every question she poses to him he will respond “I don’t remember.” He has yelled at her in public and she has had to have others help her get him back to their apartment — she knows something is wrong with my dad. At their town home, she is alone but at the retirement community she has many around her who can help if dad needs assistance.
I’m thankful that telling this to my mom registers. I wonder if it’s that I can better communicate on her terms by smiling and patiently answering her questions. It could just be that her own survival mechanisms are still intact and she is aware of her own fear. Soothed.
On the past few visits with my parents I have taken phone calls that were orders for the MemoryBanc Register. My mom let’s out a “hot dang!” then asks “can we order one of your books?”
My brain reels. Try as I might, I’m the kind of gal who has the witty response a day after it would have been useful. My defense for this has been to stick with the truth. So I tell my mom I already have a book for them.
Recently, my mom has been appreciative of the help and telling me now how much she is struggling to put information together. I have never shared with them they have been the inspiration for my business. She has no idea how many MONTHS I spent trying to find all the information on their accounts. She doesn’t know how frustrating it’s been to try and help them. My parent’s do not understand how many things they were failing to manage (bills, household maintenance) and many simple fixes their Power-of-Attorney could have fixed were derailed.
The blessing of the Internet has been that I could set-up online access to act on my parent’s behalf. I had enough personal information and knew what their PINs would be. It’s been over two years since she called me to ask how to put money in the bank. Just last week we uncovered another bank account and a life insurance policy. It’s no wonder that the Washington Post reported that there is over $32 billion dollars of unclaimed funds are sitting in state treasuries just waiting to be claimed.
It’s time to put the book in front of my parents (or a summary at least) so they can see, touch and feel more connected to their own estate. Documented.