Tag: caregiving

The Long, Tough Slog of Caregiving

Footpath in FieldsMy visits with mom now feel more like a “spot-checks” than visits. The good news is that she is finding enjoyment in the community events (or at least more interested in them than a visit from me most days) and I won’t pull her from something when she is engaged. The medical team has mentioned this several times. If the doctor comes to visit and my mom is in an activity, she will refuse to leave and tells him to return when the activity is done.

That level of thought and conversation are rare for someone in her later stage of vascular dementia. She moves in and out of this stage and has some days where she just doesn’t want to get out of bed or can’t put a sentence together. But when she’s on, she is still quite witty. I’m seeing less and less of witty mom.

I’m having to address some other health care issues like an ear infection and some suspected basel-cell skin cancers that need to be removed. Now that she is in a wheel chair, it’s quite difficult to get her to the appointments and the waiting room stay can be difficult to navigate because mom doesn’t want to wait on anyone else, but it’s still manageable.

We were hopeful that mom would get out of the wheelchair but her fall a few weeks back has dampened that glimmer of hope.

The periods of little hope and all care management are emotionaly difficut for me. I want to pull back, but know I need to continue to advocate for mom. I’m still trying to navigate hospice services, her community care services, external medical appointments and keep it cohesive and within the parameters of her wishes. It’s so easy for the medications to escalate or an issue to linger.

You know you are on a tough journey, but want to have something positive to look toward. I had accepted this decline before, but when she fights back you still want to celebrate the victory. Then you realize she unknowingly is fighting to extend a quality of life she wasn’t interested in living. I work to find the bright moments to make this long, hard path tolerable. Maybe when I visit tomorrow I will find witty mom and we can share a laugh. Hoped. 

Understanding Your Life Stage and Caregiving Skill Set

keruppertI was interviewed about my caregiving journey by Kenneth E. Rupert who received Board Certification from the International Board of Christian Coaches as a Master Christian Life Coach in 2012 and founded The Vita-Copia Group to offer life coaching services with a concentrated focus on caregivers.

When managing my family, life, and my parent’s needs grew overwhelming for me, I engaged with an executive coach who happened to also be a Christian. She taught me how to better manage all the aspects of my life from family, faith, community, and career. A huge factor was to embrace my faith and to be more mindful to the things going on around me. The process and the woman was invaluable so that I could manage as the caregiver for my parents. Lynda Alicudo is one of two women who I credit with helping me launch MemoryBanc.

The complete article Ken shares can be found here, but I wanted to share a brief snippet of his life stage classification system which is an insightful way to look at the skill set you bring to the job as a caregiver. In his article, he lists the four stages as:

· Discovering [childhood] (0-19 years)
· Establishing [young adulthood] (20-35 years)
· Accumulating [middle adulthood] (36-60 years)
· Distributing [late adulthood] (61-the rest of your life)

He goes on to speak about how these varied stages intersect with caregiving. I realize that hiring a coach as I began the difficult work of becoming a caregiver was one way to help build a strong and adaptable foundation so that I could manage this journey.

To learn more and get some tools to help you manage on your journey, here is a link to Ken’s author page on Amazon. Recommended. 

It’s not so easy to honor your loved ones wishes when they have dementia

NYtimeslogoToday, an article appeared in The New York Times echoing some of my laments in honoring my mother’s wishes titled Complexities of Choosing and End Game for Dementia. My husband sent it to me after listening to me last night talk about some of the choices I have to restate in moving my mom to a new community.

The subject of the article, Jerome Medalie, states “If I’m not me, I don’t want to be.” My mom has been saying this to me since I was in 7th grade — in different terms, but her meaning was the same. After her mom came to live with us, and wasn’t able to do more than stare out the window, I began to hear my mom tell me what I was supposed to do if she wasn’t doing well. She either told me to push over a big chest of drawers on her or hold a pillow over her head. Two very horrible choices that I would never perform. She would say them sarcastically, but it continued even into my 40s. She said it enough, that even my husband knows this about my mom. Because my mom shared these thoughts with me for so long and was so consistent, I understood her beliefs about how she wanted to live and age.

Here I sit and she doesn’t know what to do from moment to moment. For the past month, she has recognized me, but we have gone through periods where she didn’t know my name and was shocked to learn I was her daughter.

Now that she is in palliative care that was recommended by three different attending physicians, I struggle sometimes with questions like:

  • Do we give mom a flu shot?
  • If she skips a meal can we offer her Ensure or another form of nutritional shake?
  • Do we send her to the dentist?

My mom was very clear and has even at times shared her frustration at living with her “bad brain.” She’s had to learn to accept help to dress, toilet, and just move across the room now that she is in a wheelchair. She will still ask for my Dad and is disappointed when he doesn’t appear.

My measuring stick is if it “gives her pleasure.” However, I pause at the dentist since my dad ended up dying of a tumor on the back of his tongue that went undetected. But exactly where and when does this begin and end? Conflicted.

Better Conversations with a Parent who has Dementia / Alzheimer’s

conversationdemWhen people first meet me, they would describe me somewhere between quiet and aloof. I’m not sure if this is just part of my personality profile or became part of me because we moved around so much when I was younger that I learned my best friends developed with time. I have found in the work setting, listening to the discussion and saving up my voice until the end served me well.I share this because this blog and the ease at with which I share what’s happening in my life is very different from the woman you would meet in person.

However, I’m realizing that in general, I am very talkative and approachable on the subject of caring for a parent with dementia. More people know this about me than even the names of my husband and children. It is never I topic I start but I’ve found I’ve been in so many casual conversations that some aspect of caregiving or dementia is mentioned that I quickly find a common bond that seems to be broader than personal interest, husband or child topics.

Recently, I found this bond with a woman at Church. Her experience in caring for her mother-in-law sparked a fire and she recently jumped career tracks and is now going to be working in a local community to improve their services for their residents.The experience of caring for a parent is changing many of us in positive ways.

She sent me this article and I thought it included some great general tips on how to be a better communicator. I included the list as well as added some of the things I have learned in the past year. They include:

#1: Make it a priority to engage in “time-limit-free” conversations.  I found arriving with an agenda can turn your visit sideways. It’s more important to visit in the moment. Your calm translates to their calm, your angst translates to their angst.

#2: Use shorter sentences, and don’t ask more than one question at a time. Avoid asking questions about what they just ate or did. Since short-term memory goes first, this can create some discomfort when they are unable to recall the information. My mom would come up with logical answers, but had no relationship to factual information. 

#3: Talking is overrated. I like to bring pictures and share my memory behind the photograph. My parents were never huggers or hand-holders, but as often as I can I work in a hug, a kiss or a hand-hold. One of the most memorable moments I spent with my Dad was holding his hand last September, two weeks before he died.

#4: Try alternative means of communicating. I write my Mom notes as well as spend time just sitting with her around a puzzle. Doing puzzles are a great way to connect over a shared purpose and exchange smiles and winks when we find the right piece.

#5: Make as many connections as possible, both with your words and your body language. In general, I will avoid looking at my phone or email and just will sit quietly if my Mom and I are not doing something together. My goal is to give her my undivided attention when I visit.

#6: Be calm, and remember the past. I learned early on that my Mom would mimic my emotions. I work to redirect the conversation if we are moving into a direction that gets her angry. Quickly shake it off and consider bringing up a fun memory from your past to share.

#7: Don’t take it personally. So easy to understand, but so difficult to do.

This one poem always gives me some perspective when I’m overwhelmed, frustrated, angry and sad. It’s a reminder to be kinder and gentler.

I hope some of these tips help you on your journey. Experienced.

Some additional stories related to this topic include:

Manage a Visit with Someone Who Has Dementia
I provided a list of “Do’s” and “Don’ts” to help those just getting exposed to someone with moderate dementia. Some of these take time. Trying to connect and being present is more important than executing these perfectly. 

Three Go-to Tactics for Dementia Caregivers
These have served me well over the years.

 

The Two Stinky Options for Dementia Care Givers

marie marley
Marie Marley

I am thankful that my parents choose their retirement community. It alleviates most of the guilt I feel, however, it doesn’t mean you aren’t involved or acting as a care giver. Helping my parents has been and continues to be a part-time job. The community works with me and my siblings — we are actively involved as advocates and care givers — and have been for more than two years.

Right now my siblings and I are struggling to know if my Mom is in the right place. With dementia, the transitions are the trickiest and I’m not sure one community will always be the right place for everyone. The set-up of the Assisted Living community is proving to be very challenging now. We are possibly going to have to find her a new place if the place she selected confirms that they are just unable to help my Mom any longer.

I enjoyed reading this article in Huffington Post by Marie Marley who speaks to The Pros and Cons of Placing Your Loved One in a Facility.

It’s a good read, and a good reminder that both choices stink. Conflicted.

44 Million Caregivers in the U.S

replyhazyOne of the most striking realizations for me lately is how many of us are out there helping an aging loved one. In November 2012, the Alzheimer’s Association reported that 43.5 million care for someone 50+ years of age and 14.9 million care for someone with Alzheimer’s disease or other dementia. 

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.