Strokes and Dementia

strokeI recall the many visits to the neurologist with my mom after her stroke. We learned this was her second stroke. The doctor guessed the first one happened over a decade before but went un-reported or un-diagnosed. The second stroke began with dizziness and after watching my mom try to walk, my dad drove her right to the emergency room. The second stroke left no physical reminders, but there was a noticeable difference to my mom’s memory and how she processed information. They told me she had an ischemic stroke.

Over the six-months of visits, we really focused on understanding the cause and how to prevent a future stroke. The doctor never explained how the stroke might impact her ability to drive, manage her finances, or retain information. She also never mentioned that based on my mom’s behavior, that she probably had Vascular Dementia.

When I was talking with a client last week, he stopped me to ask why I used the term “vascular dementia” to describe his partner. She had a stroke and when I spoke with her, she had trouble getting out her words and he admitted that she had had trouble with her short-term memory. I’m not a doctor, but I shared that she seemed to present like my mom did after her stroke.

The interaction reminded me just how difficult it was to get my mom and dad diagnosed. The first neurologist for both of them never even used the term “mild cognitive impairment”, although to me and my siblings, we all recognized something was different in their behavior and thinking. Had we had an earlier diagnosis, maybe we could have developed a better plan of care to have them live with purpose and meaning for the rest of their lives.

I hope if your loved one has had a stroke, you might have more information to understand the impact and how it might shape the coming years. Every one is different, but I worry that the move to shorter medical appointments will make it even harder for the next wave of caregivers to come. Wondered.

My mom had a stroke, what do I do?

stethoscopeHeartOver the past month, I have had several friends tell me a parent is having trouble medically and they are unsure of what to do. In the midst of a crisis, having the conversation about how to help often comes across as gloomy, as if you don’t expect them to get better. It’s why I suggest that you have the conversation early and often. If it’s part of general conversation, exchanges of ideas, hopes and wishes, it is not gloomy. When you discuss your options before there is a crisis, you have a lot more choice.

Many of us realize that after mom or dad had a medical issue and now needs more care. Your options are limited if you are doing your selection from those facilities that can take you; or interviewing those caregivers that are available.

While I was frustrated by my parent’s unwillingness to share or curb their life based on limitations that came from the aging process, I totally understand it now. I crave to give my mom activities that would fill her with meaning and purpose. Now that I am managing everything, I sure wish I could share some of the duties with her. It would make both of us happy.

After the critical incident, you do what you can, as best you can. Take a moment to consider how many people are aging without the help and support of a loved one. I am proud of how I’ve worked to help my parents. As difficult as my job has been, it’s infinitely easier because my parents were quite clear about their thoughts on life and living. We watched two grandmother’s fade with dementia, and we discussed it. My siblings are also supportive and we used this to bring us closer together.

My hope is that you don’t repeat the mistake that put you in this position. Your job is to:

  1. Get your stuff organized
  2. Define your wishes using The Conversation Project to get talking or Five Wishes to create a plan that is legally binding in 42 states.
  3. Work with an estate lawyer to get at least  a durable power of attorney and medical directives in place (if you don’t use Five Wishes)
  4. Discuss your wishes and plans with those people who would be the ones to step in and help you.

The U.S. Department of Health and Human Services reports that 7 out of 10 people turning 65 need long-term care services averaging 3 years. To me, that confirms that most American’s will have to accept that another person will be making choices about their healthcare, finances and living arrangements. Have you made sure those who will fill this role know what you want?

My siblings and I have made many decisions for my parent’s. The most difficult was having to opt not to start cancer treatments for my dad who was in a moderate stage of Alzheimer’s. Just the thought of this decision still brings tears to my eyes. However, I know we made the right choice for him because we had conversations about quality of life for years leading up to this event.

Four products to help you navigate these choices include:

Five Wishes lets your family and doctors know:

  • Who you want to make health care decisions for you when you can’t make them.
  • The kind of medical treatment you want or don’t want.
  • How comfortable you want to be.
  • How you want people to treat you.
  • What you want your loved ones to know.

The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care

The Roadmap to the Rest of Your Life by Bart Astor will help you hone in on the options and the choices that you need to consider.

MemoryBanc: Your Workbook for Organizing Life is a practical system to help couples share account numbers, usernames, and medical and household details so that they can stay on the same page; it also provides individuals a solution to easily share this information should they ever need a loved one to step in and help them.


Lurking at the Aging Crossroads

Over the past month, I’ve heard more stories about friends, colleagues and acquaintances being diagnosed with some form on Stage 3 or Stage 4 cancer. I was starting to think I’m in the “cancer years.”

Then I heard that a dear friend’s sister-in-law had a stroke at the age of 43. So it’s not just cancer. This news churns my stomach. I thought strokes were just something that threatened you in your 70s – the reality that strokes can happen at any age and rob you of your mind in what I consider to be (so far) my favorite decade, frightens me.

My hope is that this is just a phase.  When the gates close on my 40s, things level off. That doesn’t sound reasonable on paper – but I’m still hoping it to be true.

I’ve been lucky. My parents are both in their 80s and all of my siblings, their spouses and children are still on this planet. We’ve had brushes with cancer but in general, we are all mobile and healthy.

I’ve been so focused on how not to become my parents, I lost track of all the other things that can creep into our lives and steal us away too early. Reminded.

Already have a mouth sore?

Some of the bonds you have with family are just plain odd – but they are familiar so you don’t really know how odd until you start to tell other people. I had to preface this story with that statement, because I know this will seem weird, but I’m owning it!

My brother and I have always joked about how we get a mouth sore if we eat too many salty foods.  He’s been visiting with my parents for four days and I know almost every meal has been at the retirement home, the country club or Arby’s. Those are three food sources for my parents these days.  When I return from my trip I ask him, “Already have a mouth sore?” He smiles and shakes his head no.

Both my brother and sister offer to cook, but my parents prefer to eat out. I tried several times to take over casseroles and stews, but they would go uneaten past the point of me making it and putting it on the table in front of them. There are so many changes in their behavior, I am sometimes with strangers.

My mom had a stroke and was told to eat low salt, low fat foods. Even if she did remember, she would not change her diet. She’s very thin, always has been. I remember on a doctor report she was described as “frail” and she really bristled at that word. Today she’s at least 10 pounds lighter.

I struggled with myself when we ate together for the past few years. She would order chicken fingers and then pour salt over her plate (no, she does not taste it first). It took me a while to overcome watching her eat against what the doctor suggested. She enjoys choosing her own meals.  As far as I know at this point, changing her menu won’t improve her brain functions. I am letting this sleeping dog lie. Tempered.