Years ago it was “the phone tree”. Something would happen and the church ladies sprang into action calling everyone and arranging casseroles. Today we have wonderful tools like http://www.caringbridge.org and http://www.carecalendar.org/
Most recently I used http://www.lotsahelpinghands.com to help a busy Mom, with three kids recuperate from breast cancer surgery. We all wanted to help but didn’t know how. Her family entered a variety of tasks to support her family. Meals, dry-cleaning, kid care and sweeping the floors were a few options. You had to be quick as people were anxious to help and the needs filled up within hours.
My mother has Alzheimer’s Disease. We are in a difficult stage, her needing help but refusing it, my father needing a break but unable to leave her alone. My brother and I are miles away raising our families and pitching in as best we can.
Aha! A “care calendar”! My parents have called their community “home” for fifty years. Many people expressed concern and offered to help. I pulled together a calendar of short visits, rides needed to appointments and opportunities to deliver a meal. I hit send and waited for the calendar to fill up…….nothing.
I then received an email stating “The time has come to seek professional home service help for her. I want to visit her but I can not be responsible for her care. I am sure there are services that provide these requests.” I was shocked. So I asked myself some questions, and I hope you readers have answers.
Do you think this is a generational difference? If that is the case, why did the old phone tree system work? Do you think the computer is a barrier to engaging people 70 years and older? Or when people reach retirement and have “money” do they assume everyone should just pay for their care?
I also considered something else. Do you think it is the Alzheimer’s Disease? This horrible journey just began for our family. I can imagine it must be frightening to see your peers change and watch their increased confusion. Is there something I should be doing to help them feel comfortable?
Social interaction brightens my mother’s day and gives my father some respite, even if for a half hour. These visits are opportunities to be present with my Mom and cherish her, even while driving her to her hair appointment.
Would you volunteer to “care” for someone, or should we leave that to professionals?
Wendy, what thought provoking observations and questions.
Briefly my own experience – when my husband’s Alzheimers condition forced us to quit farming, we made the mistake to move far away from not only familiar settings, but also all the people we had known for decades. Our situation did not encourage us to seek new friends or get involved in local affairs. While I felt isolated and abandoned, my husband’s experience was even worse because he also never was able to adjust to a totally alien environment he did not recognize – after a few run-ins with cactus, he was sure they were out to get him, which only got worse as time went on.
As to your question if it is a generational thing – I believe it is a societal thing – society having become more isolated from each other. The generations prior to TV depended on the outside world for entertainment, interaction and communication. After there was a TV in every home, bringing in the world 24/7, people not only had those needs met, more and more, people even resented being interrupted during favorite shows.
Over time, I have encountered comments like” Don’t call me between 3 and 4, I’m watching Ophra”, Dr. Phil, Jeopardy, or what ever. Or if one visits, even if prearranged, the TV is never shut off, not even turned down. Hardly encouraging to conversation or interaction.
Of course many other changes have taken place. People entertain less in general, often don’t even know who their neighbors are, women work outside the home with often little time left for socializing. But let’s face it, our litigious society, thanks to ever eager lawyers looking for prey, also is cautious about getting involved…. and thus, instead of going to visit or lend a helping hand, we are worried that somebody might sue should a problem arise while looking after a neighbor or non family member. Add to those worries the fact that those “casseroles” might be used for a lawsuit or that the recipient will not eat it if they don’t know the donor.
When it comes to neighborhood support, yes, things surely have changed – the pre-TV generation is getting too small and old to still be a force in neighborly support, the next generation is too absorbed in their own lives and nobody sets examples for the next generations to even think of springing voluntarily into action in support of neighbors which they most likely don’t even know. Whose fault is that? That’s a whole different subject to explore.
May your post have initiated interaction and action all over the land.
All my best to you and your loved ones.
Margarete
Thanks for your comments everyone! Our biggest challenge is that we are in a crucial time of transition. We have a solution mapped out, but we are in a time period of (hopefully) a few months before we can move them into accommodations that serve both my parent’s needs. It is at this gap time we really need help and I am perplexed by the lack of assistance offered by their peers. I think every journey with Alzheimers is different. Some parts of the road will be filled with sweet & cherished moments, some are going to be incredibly challenging as we absorb the blame, anger, sadness and suspicion directed at us. It is expected and clearly part of the disease but is “horrible” when you experience it. Which is why I agree with Christy – I think Alzheimers is scary to people and the process of memory loss manifests itself in unexpected ways. This may be part of why people are reluctant to offer assistance.
I think there is a generational gap with the on-line calendar. My parents are the first to provide a meal, water a neighbor’s garden, or run errands for friends in need. However, they would never think to check a computer and sign up. The phone works for them.
I wonder if the hesitancy to lend a helping hand has something to do with the disease – Alzheimer’s. Unfortunately, the “Big C” has touched all of us on some level. People have an idea of how a patient is going to “fight” cancer and there is hope that they can beat the disease. People don’t know much about Alzheimer’s – there is not yet the hope of “chemo-type” treatment to restore your memory. Are people struggling to reach beyond their comfort zone to spend time with a friend who may or may not recognize them? Is it a fear of the unknown? Or does it have something to do with a feeling of hopelessness in losing the person we once knew?
I believe you are looking for people to provide some social interaction and some respite for day to day tasks like making meals and driving to appointments until your family faces that next step of moving your mother into a live-in care facility. Having recently spent time with your mother, she still has tremendous social skills and enjoys people. I’m hoping the hesitancy and fear to lend a helping hand will soon pass so you and your family can enjoy the time you have with your Mom.
Wendy,
Your article is on point and your questions are good for those dealing with these issues.
I think the email you received makes sense. Dealing with two parents (Alzheimer’s and stroke) we have relied on family, friends, and professional services. We reached a point of moving my mother away from her home town as professional services and friends could no longer fulfill all the required care. Each aspect of care (professional, family, and friends) is essential and knowing when to rely on each is important. Having people to assist in that process with wanted or unwanted e-mails may be beneficial. (You don’t have to agree with them)
I also do not consider Alzheimer’s disease a “horrible journey”. It is part of our human condition which we can choose to meet with as much compassion as we wish. My mother is far into the journey and I treasure my time with her as much and possibly more than if she did not have the disease.
Finally, there are some great care facilities in the Twin Cities to assist in the process.
Wendy:
You pose an extremely difficult question, but it seems like you have a very good support system within your family. From a purely personal perspective I would want to care for my parents until professional care is a “must” (that stated, my family is on another continent).
Being on the board of Little Brothers – Friends of the Elderly, and also in my role as a visiting volunteer, I see first hand the difference social interaction makes in an elder’s life. The home my elder friend lives in in soulless and sanitized. Just going there and bringing something of the world outside with me seems to lift Nadia’s spirit.
I am probably not telling you anything you don’t know and my thoughts are with you as you travel along this new and uncharterd path.
Wendy, thanks very much for this column. Perhaps this is changing your question a bit, Wendy. But we found that living in the same city with two of our children’s grandparents had enormous benefits for our children, ourselves and the grandparents. Now that we are grandparents ourselves, we are experiencing the same thing since our granddaughter and her parents live 10 minutes from us. The three generations see eachother at least weekly, and sometimes more often. Our lives are enriched by constant contact, and we have a dramatically different relationship with the parents and granddaughter because it is not a once or twice a year visit. We feel blessed to be living 10 minutes or less from our 3 adult children, all of whom are married.
Joe Nathan