As a caregiver, you learn the important role you fill when you speak up for your loved one. This talk by Samuel Cohen inspired me. He reminds us that our loved ones with dementia (including Alzheimer’s) are unable to advocate for a cure for themselves. And now that they are gone, I now have the time and space to help answer his call to advocate for those who suffered from this disease.
Honestly, it’s also self-interest. I aspire to be an active grandparent for my children. Because I had them later in life, I will be in my 70s most-likely when (and if) there are grandchildren. If I want to have a relationship with them, I need to know then in their teen and young adult years.By then, I will be in my 80s. Statistically, 50% of us living in our 80s will have some form of dementia if we don’t find a cure. Undertaken.
The “2014 Alzheimer’s Disease Facts and Figures” [PDF] report found that women age 65 have a one in six chance of developing the disease, a type of dementia that causes problems with memory, thinking, and behavior. Meanwhile, men the same age have a one in 11 chance of developing the disease. Women in their 60s are also twice as likely to develop Alzheimer’s than breast cancer over the rest of their lives.
The news release included information on how the disease is impacting women in the workplace differently as well. I found managing a full-time position and caring for my parents, my family and myself overwhelming. Those of us in the sandwich generation can’t argue with these figures:
The heavy toll Alzheimer’s takes on women also reaches into the workplace, according to the Alzheimer’s Association. Among caregivers who were also employed while providing care:
• Twenty percent of women, compared to 3 percent of men, went from working full-time to part-time.
• Eighteen percent of women, as opposed to 11 percent of men, took a leave of absence from work.
• Eleven percent of women versus 5 percent of men gave up work entirely.
• Ten percent of women compared to 5 percent of men lost job benefits.
My father who was diagnosed with Alzheimer’s died of cancer back in September. This is our first birthday without him. It’s taken me some time to digest what I have been saying for many months — he’s in a better place now. He was uncomfortable and couldn’t eat in the final month of his life.
My Dad was wonderful. Most of my friends were surprised to find what a kind, silly man he really was.While I miss him dearly — it was difficult to mourn our loss when he was still on this planet but no longer himself because of the Alzheimer’s. I have a lot of wonderful memories and will celebrate the day by reflecting on all the great things he taught me and all the wonderful moments we shared.
I included a picture of a moment a staff photographer captured as I was fixing one of his pins before a parade. Treasured.
Dementia sucks for everyone. It is little understood and robs the afflicted of their memory, independence and usually in the later stages of their dignity.
When this journey started, I had to look up dementia versus Alzheimer’s. I will admit that I’m a little conflicted about how one type of dementia (Alzheimer’s) dominates the dialogue — regardless, I was pleased to see Seth Rogen’s approach to help shed light on the disease.
If you have been reading my blog, you know that I’ve had many situations that while tragic, were downright funny. This journey is hard, and humor helps.
Our system doesn’t work. I know my story is unusual because I had two parents with similar stages of dementia, but I just had to learn faster. Our problems were magnified. My parents either couldn’t recognize or wouldn’t admit their lives needed to change. It meant less freedom and they were unwilling to accept any assistance.The dementia crept in and eventually, they were unable to comprehend the situation.
My parent’s fully believed that selecting a Continuing Care Retirement Community (CCRC) would mean they would “never be a burden to their children.” You can wade through over 300 stories I have shared in the past two years on how difficult this journey has been. I imagine most children have a love/hate relationship with the place their parents are staying.
My parent’s were happy with their choice, and the day they were moved into Assisted Living removed a huge weight from my shoulders. I’m very appreciative of the way my parents CCRC handled the situation.
However, I’m not satisfied that we have found the right options. I spend 20 – 30 hours supporting and visiting my Mom many weeks of the year. I know that isn’t what they intended, but I’m duty-bound to provide.
How can we change this dynamic so we don’t keep making the same mistakes? Queried.
Please share in the comments section how you are approaching or have decided what to do for your most senior years.
My brother knows of my personal , non-medical, opinion that General Anesthesia would be hard cognitively on my Dad. I agree that we need to walk this next step and should have this discussion with his primary care doctor.
We can’t get into to see my Dad’s doctor until next week. She is part of a practice, so I explain the situation and ask her to get me the first appointment with ANY doctor in the practice.
We get in the following day and the appointment is a disaster. None of my Dad’s records are correct and the Doctor is aggravated that he doesn’t have any specific orders. He comes in to sit with my brother and I and we walk him through our goal.
During this visit, my Dad has fallen asleep on the examining table. The doctor tells us he needs to do an EKG and review his blood work. The EKG reveals some irregularities and now we are referred to a Cardiologist.
My Dad isn’t eating or drinking much and is very weak. As we are leaving the doctor’s, I grab his hand to help him walk.
I haven’t held hands with my Dad since I was a small child. My 49-year old hand fits easily into his 81-year old hand and we comfortably stroll back to the car to go home. Loved.
We are obviously rookies at dealing with cancer. My Dad is not going to choke in his sleep and is not aspirating. The Emergency Room doctor understands our angst and helps get us into the oncology practice the next day.
After my Mom was escorted out of the Emergency Room, we had to wait for the test results. However, now my Dad is anxious and starts demanding that we leave. When I remind him that we are there to help fix his tongue, I can usually buy a few more minutes, but then the demand returns.
I was holding the bathroom break for another stall tactic and finally have to use it. When I return, the nurse has arrived with a flu shot for my Dad. He apparently requested it when I left the room. The sight brings a smile to my face. My Dad has always gotten his flu shot and when we sat down in the room, he noted the sign that advertised “Get your Flu Shot Here!”
We are unsure of the cancer fight we are about to embark upon — but at least we know my Dad won’t have to worry about the flu this winter. I will put that in the Win column. Amused.
** Full-Disclosure Policy: My posts are a little behind real-time. But I wrote these as I was going through the process, but was unable to complete and post while we were in the midst of caring for my parents.
This time I arrive with forms filled out. After a short wait they escort my Dad back to perform the scan. He returns a half-hour later. While we wait, I looked for local places to eat that would interest him. He has always been an adventurous eater. I find a local place that is well rated on YELP that offers empanadas. I tell him what I found and he agrees to try it with me.
We arrive and order a few with drinks. He tries his best to enjoy the food, but I can see he’s having trouble with anything that has texture. I realize that he should be on a liquid and soft foods diet. Eating is just too hard for him now.
I wonder how this could have progressed so far without anyone in his Assisted Living community noticing and even having it go undetected at his annual physical which just happened a few weeks ago. We now know something is very wrong and it’s going to take a few weeks to even understand it and learn if there is anyway to make him comfortable.
I sense a new lesson coming on. How will we manage cancer in my father who is also dealing with dementia? Vexed.
While my parents are in Assisted Living and receive medical care and support for their activities of daily living, I still want to continue their habit of an annual physical with their military doctors. It allows me to ensure that I am well versed on their medical state, understand and ask questions. Most of their appointments in Assisted Living happen when I’m not present and it’s difficult to piece together from the reports. Many times I can’t read the doctor’s hand writing.
As we sit in the medical office waiting for the doctor to arrive, my Mom is telling me that Dad is not doing very well. She is angry that he doesn’t engage in more activities and won’t join us on our shopping trips. Repeatedly, I have shared that Dad can’t help that his brain has changed, which changes him. I tell her he might feel uncomfortable leaving their home. When my Mom continues to complain to me, I will usually softly tell her that Dad has been diagnosed with Alzheimer’s. “Oh” she replies.
This is not the first time I have told her this, but she doesn’t remember. I try my best not to resort to this because each time I tell her, it feels like she is hearing the news for the first time. Each time, she is noticeably saddened by the news.
She asks if this means she should be a little kinder to him. She admits to chiding him for sitting and reading all day and showing no interest in any activities. She knows that he is going to see the doctor after her and says “Let’s not have the doctor tell your father he has Alzheimer’s.” Beloved.
Today is the day we move my parents. My last sibling arrived late last night so we could all show up to help our parents with the move. My home can’t manage all 3 of my siblings comfortably, so one brother and sister stay in my parent’s town house, and another brother stays with me at our house. We decide to meet in the morning and set the game plan over breakfast.
Our parent’s are looking forward to having all the kids in town. After they were notified and we spent the rest of the day discussing and dealing with our very agitated mom, we stopped talking about the move. When we set the timing with the Executive Director of the retirement community, she strongly suggested that someone stay with my parents full-time after they are notified. My oldest brother W. was the freshest, so he took the last day and a half with my parents.
At so many twists and turns, our parents have surprised us. We were concerned they would leave the retirement community and go stay in a hotel. By not raising the subject, we have avoided the debate. By day two my mom had either forgotten the impending move or assumed her refusal to accept it made it go away.
Today we will arrive a half hour before the movers are set to show up. We know it’s not going to be easy, but the day is here and we need to help our parent’s manage through and make this transition. It’s the best place for them going forward. Undertaken.