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~ Maureen D. Brucker
The word came suddenly in a text message.
‘Judy took the journey last night.’ I met Judy
through a sister sun dancer. She was not well
even then. A mass of contradictions defined
her reality. She carried a cooler full of jars of
juiced vegetables because that was the only
way she would eat them. This was a serious concession to her high blood pressure, high cholesterol and barely controlled diabetes. The second, larger cooler was full of lunch meat sandwiches and containers of potato salad. This filled in as more vegetables and protein – her interpretation of the diet someone gave her.
I often wondered how she could have a significant role as an elder in her community while taking such poor care of herself. It was a concern but I was sufficiently removed from that community that prayer and the occasional email was the extent of my input.
Heart disease was a major piece of the puzzle. Chest pains were commented upon. On several occasions, I got up the nerve to at least ask about medical care as I knew she was on Medicaid. The answer was always ‘I have the best cardiologist in the Springs!’ I wondered as the situation kept going downhill. About 18 months ago, word got to me about Judy ‘having an incident’ and now was put on oxygen 24/7. Again I wondered about this ‘fabulous’ medical care.
Spoke to my sun dance sister about this care because she, too, lives in the Springs and also has some very serious medical issues. Apparently Judy did a lot of doctor hopping when suggestions were made concerning lifestyle changes. If it could not be solved by a pill, it was too much effort.
I have no doubt that depression was a major factor in the mix. When someone is told they must lose a whole lot of weight, and they have been heavy all their lives, the message is difficult to accept. Then they must lower cholesterol and blood sugar. Suddenly they must exercise daily. Change their diet. This is all overwhelming.
I have another friend, Kathie, who is thankfully still alive. She has gone from pre-diabetes to diabetes. Again we are seeing high blood pressure and high cholesterol. Heart disease has recently been added to the mix. She has children and grandchildren to tend. Her parents are both alive and seriously need a great deal of care. She wonders if there are enough hours in the day to take care of all these responsibilities. Her personal issues keep getting put on the back burner.
I have other friends battling lupus or breathing problems who are also overwhelmed and depressed. At least here, in the central and northern Colorado Front Range, there is very little in the way of inexpensive continual support for sufferers of multiple chronic conditions. Oh, there are courses – 1 to 4 educational sessions with a couple of nutrition sessions thrown in for good measure. Most on a group scale. Good at what they are meant to accomplish but that is all.
Yet, what do we do for our friends, our tiospaye?
Do we watch them continue to fall deeper into their diseases like Judy, until they take the journey and settle into our ‘loving memories’?
They need more than our prayers and a pat on the back. They need programs.
Type 2 diabetes is at epic levels across the country. The present education classes are good, but not nearly enough. People are being given complicated, life threatening multiple diagnoses then after several weeks, are being left to fend for themselves. True, there is follow-up every several months but that simply chronicles the failure of the patient to continue with the lifestyle treatment plan.
We must do better. As a family, as a tiospaye, as a group banding together in the midst of a city, as those in small towns, we must recognize we are failing our brothers and sisters.
Last night I got my step-brother involved with Kathie. They are good friends though living at a distance. Much more importantly, health wise, he has been where she is. He has diabetes, high blood pressure, high cholesterol and heart disease. Unfortunately, he chose to make the necessary lifestyle changes too late in life to prevent complications. Thus, he has stents but they are unable to perform open heart surgery because he is now on dialysis. Maybe he can persuade her to see that the changes are worth working on.
The biggest pity is the true desertion of these people by the medical community. I know, they are busy dealing with insurance companies and such. Unfortunately there is no time allotment for out-of-office chronic disease support in many insurance plans. I truly wish it were different. But somehow, for best and healthful results, there must be a commitment to do better.
It starts with Medicare and Medicaid declaring glucose test strips preventative medicine and permitting quantities based on doctor patient decisions. A simple change that requires little effort. For that matter, let’s make sure that those with high levels of blood sugar but not yet diabetes as well as those with fully diagnosed diabetes have monitors and the training to use them.
Time to provide all those with COPD with effective smoke cessation tools. Yes, smoking is a problem for most of them. The guilt route is beyond cruel. These are men and women who need serious help. Many need to be on disability. Punishment has no place in treatment or caregiver attitudes.
Support groups have been helpful for those suffering from various addictions. Time for their widespread availability for those with all kinds of chronic diseases. For some, regular attendance will keep them going and on track. For others, the occasional visit for companionship when times are tough, is what is needed. In all cases the availability of the meetings are important.
Rural areas are particularly vulnerable. Yet, these, almost free, self-help meetings can make the difference in saving lives. Churches, schools and libraries should be encouraged to open their doors to such groups. In some cases, they will be misused, but in most instances, they will be life savers. In all cases the non-sectarian nature of the group must be respected. After all, the goal is a safe, caring environment in time of need not a recruitment platform for a cause or belief.
So where do we go from here? We start by supporting our friends and associates struggling with chronic diseases. From there we support community assistance projects meant to encourage better management of the various diseases without prejudice. We remind our governmental representatives of the need to beef up Medicare and Medicaid to provide doctor authorized tools for the monitoring of symptoms. The goal being healthier and more productive citizens.
In all cases, attention to our own chronic conditions are foremost. Once stable, we are in a position to humbly assist and support others. Together, we can end the loneliness and despair of chronic disease.