Our April Support Group Meeting – Part 2

Continued from the previous blog.

Then the speaker turned to Tim and asked him to put up the list of complications. Once they were up, the speaker asked the PWD if he understood what this could mean. He was looking away and did not answer. The speaker asked the PWD why he would not look at the screen. No answer, and the questions was repeated and repeated several more times until the PWD tried to leave the room. The speaker stopped him and asked him if he was afraid to admit he had diabetes. The PWD was seated and the speaker asked Dr. Tom to join him.

Then he told the rest of us to be seated, as this was going to become tense. The speaker and Dr. Tom spent the next almost half an hour asking the PWD question after question. They waited just long for him to start an answer and receiving no answer, the next question was asked. Finally the PWD started crying and he was taken from the room by the speaker and Dr. Tom. As they were leaving, Dr. Tom asked another doctor to accompany them. In about 10 minutes the second doctor was back to get my meter and lancet device. He asked Tim to go through the slides and who ever could help explain, please do so.

We started covering the slides and the doctor came back for the rest of the family. Then about 15 minutes later, they all returned and the speaker explained what had happened and why they had been excluded intentionally. The PWD asked to speak and when given the okay, admitted that he had been in denial and his refusal to accept the diagnosis of diabetes. He then explained that his first A1c had been over 15 and then tonight having a second A1c over 14 was even a larger shock. He had figured out how cover with numbers for the meters he had and had used this for tricking those around him.

He said that with an audience of people with diabetes, he knew he was going to have a hard time. Then when the questions started he said the one that had gotten to him was the question - “What makes you think you are so special that you can't get diabetes?” He continued that he did not know of any family members with diabetes, but he had heard of several others that had no family history of diabetes, but still had type 2 diabetes.

He finished by saying he had now accepted that he has diabetes and the doctor we call Dr. Tom would be his new doctor. To help Dr. Tom, the PWD turned to Tim and asked if he could be a member of his support group and that he would be on insulin after he saw Dr. Tom on Monday morning. Tim asked for a show of hands from the group members of our group. It was unanimous and that was done.

The speaker asked what the reaction was to this type of intervention. This drew a round of applause and he held up his hands for silence. He continued that the reason for privacy he felt was necessary to help the PWD accept his diagnosis and this was the reason he addressed you when we were done. The speaker said the PWD has a lot of healing to do and will need the support group for help.

The speaker said he would send Dr. Tom a summary of the happenings that could be shared and he would then send it to Tim for distribution. He said if Tim does not have your email address and you wish to receive this, please give it to Tim after the meeting.

The speaker said he would still do the other session, but felt this evening could be valuable for everyone and did not want to let it get away. He said to let Dr. Tom know if they needed the second session. Tim asked when and the speaker said he could not do it in May, but after that he could. Tim asked for a show of hands that wanted the second session and it was unanimous for the first part of June. The speaker said he would check his schedule and let us know through Dr. Tom, but hoped it would work.

Another 45 minutes of questions and answers and the meeting ended. Tim obtained the email address for the PWD and let him know he would receive a notice of all meetings and receive a summary of all meetings even if he was in attendance. Tim was surprised when he gave his wife's email, but the PWD said she should come if she was allowed. Tim called her over and explained the rules of her being allowed and she agreed.

Several others thought they may not have given up their emails and felt that with the last two meetings, they would like to be present for the third meeting. Jessie and her husband then talked to Tim and told him that he was a distant relative of theirs and they would like to be informed if there were future problems with him. The PWD had noticed them and was surprised to see them. He asked if they had diabetes and we could see his chin fall when they said yes. He had the presence to ask if he had other relatives with diabetes. Jessie nodded and then he really broke down and cried.

Dr. Tom and the speaker both started toward him and he said that he was okay, but so very disappointed that he had not known about relatives having diabetes. The PWD asked Jessie to list those she knew about. She said herself, and listed five other of their relatives that had type 2 or type 1 diabetes. Now he was in shock as he had contact with them rather regularly and he wondered why he had not been told, especially the two with type 1.

Jessie said this was because the entire family was too secretive and very seldom talked about this with relatives. The PWD asked his wife if she had heard this, and she admitted that as a non-family relative, she had heard nothing about what he had just learned. He said this puts a whole new perspective on his situation. He said thank you to the speaker and said to Dr. Tom he would be there on Monday morning. Jessie said she could have spoken up earlier, but was not sure if she should. The speaker said that this was a lesson she would need to learn. After another 15 minutes, everyone was leaving.

Our April Support Group Meeting – Part 1

In the few weeks leading up to the meeting April 12, Tim received emails from several unable to attend March's meeting and Tim made sure to ask for extra chairs and made extra copies for each. When the meeting started, 89 were in attendance.

The speaker said I have a special presentation for you this evening. He said this is unplanned, but started this afternoon and the family has consented. I will be doing an intervention for you. He introduced the family, then the wife, and the person with diabetes. There were a few hands quickly covering mouths, as some recognized the person with diabetes.

The speaker asked the person with diabetes (PWD) to explain the action he was taking and why. The person with diabetes stood up and said I have some questions first. The speaker asked him to continue. He asked how many people had diabetes. Every hand went up and he was a little surprised. He next asked how many had diabetes for more than three years. Only seven people did not raise their hands.

Next, he asked how many had not known relatives with diabetes. Nine people raised their hands. Now he asked how many felt they had been misdiagnosed. No hands were raised and he said I have been misdiagnosed and don't have diabetes. I will do a test to prove it. Allen stood and asked when he had last had anything to eat. He answered about four hours ago. Allen then asked when he had last washed his hands and he said about an hour ago.

The PWD pricked his finger, tested, and then asked his wife to read the results. She said 209 is what the meter says. Then he picked up a second meter and also use this to test. When he read the results, 88, everyone looked around in disbelief. One doctor asked to see the meters before the test strips were removed and they were put away. They were offered and the doctor said, there is no blood in the test strip and the meter is still showing the number 88.

The speaker interrupted then and said the readings in his office three hours earlier were the same. The wife of the PWD asked if this was what he was using and had the meters preset to try to fool everyone. With that, she opened both test strip containers and said that the ones for the one meter, all had blood in them, and none on any of the strips for the second meter had blood.

The speaker asked if anyone had their meter with them and new lancets. Ten of us raised our hands and the speaker asked me to bring my meter up. Once there, he asked that I remove the lancet and insert a new one. Next, I used an alcohol pad to clean the lancet device and set the depth to #3. Next, the speaker removed another alcohol pad and cleaned his fingers. Then he removed a test strip and inserted it in the meter.

When he asked the PWD to hold out his hand, he refused. He asked a second time and again he refused. The speaker asked if there was anyone he would let prick his finger. The PWD said he was the only one he trusted. The speaker announced that he was in denial then and had some depression in addition. The speaker turned to the group and asked Allen if he would come up. Allen got to the front and the speaker asked if Allen agreed with his analysis.

Allen said he agreed and asked the speaker if he could ask two questions and the speaker agreed. Allen asked the person with diabetes if he had pain in his feet that felt like a thousand needles. He answered no, but his wife said he doesn't like anything on his feet at night and had constructed a metal frame to hold the covers up away from his feet. Allen asked if he had been tested for vitamins D and B12. When he would not answer, his wife said no.

The speaker asked when he had been to his doctor and he would not answer. The speaker asked the wife and she said about nine months earlier. She continued that he would not see the doctor again and had protested seeing this doctor. If it was not for their two children, the wife said he may not have gone.

The speaker turned to me and asked if I had any questions. I faced the PWD and asked if he would let us know why he would not accept us testing his blood glucose and why he was afraid. He would not answer. The speaker turned to him and asked if he would allow Dr. Tom to do an A1c test which would measure his previous three months. He nodded his head and Dr. Tom came up and asked to borrow my lancet device. He carefully pricked one of his fingers, wiped away the first drop, and gently squeezed another drop for the A1c.

After getting the blood for the meter, he held it carefully for a several seconds and showed it to the speaker. The speaker asked the PWD if he wanted to read the results and he said no. Then Dr. Tom said it was over 14. Dr. Tom said this meant that his blood glucose for the three months was over 350 mg/dl. Then Dr. Tom asked what his first reading was and the PWD would not answer. His wife turned to Dr. Tom and said even higher.

Continued in the next blog.

Why Is the Other F-word Not Often Discussed?

The other f-word you ask. That would be fear. Then you add the d-word – diabetes – and people can develop brain freeze and do nothing – the other d-word - denial. Then we have the s-word – secrecy - that seems to take over and people just don't want to take care of themselves or allow family members to help.

The above is a prescription for trouble and letting the complications gain the upper hand. This is happening more often than it should and several of our diabetes support group have lost friends in this situation. Allen has lost two friends in the last year and now A.J. has lost a relative.

Tim had heard the news and suggested we have a meeting about this. Everyone agreed and we had a short meeting on Saturday afternoon, March 8. Everyone was present and Susan was welcomed as a member. A.J. thanked us for our support, as he was not sure what to do, as he had not been able to make a difference in his cousin's life. His cousin's wife had asked for his help and he had tried.

Then Brenda said she had lost a friend about 6 months ago and had not said anything.  Tim said that is why he had asked for the meeting. He said we need to figure out how we as a group can support each other and at the same time use intervention to help these people. I said we need to explore several avenues. I said that Dr. Tom would be here shortly and we should start with his recommendations.

Allen said that would be a good place to start. I added that there was another person that could help and I would see what Dr. Tom thought about that. I said this is a person, who specializes in interventions and he may be able to teach us what we need to learn or what we should do.

At that point, Dr. Tom arrived and Tim filled him in about the problems we were encountering. Dr. Tom said he was not sure how to handle this and I suggested the doctor I had spoken about earlier. Dr. Tom said this was probably the only person we should consider. I said I had a question since I felt he wanted to charge us for any help. Dr. Tom asked if he could call him and we agreed. He excused himself, stepped outside the room, and called.

When he came back, he said I was right and he would charge us for teaching us how to do a proper intervention. Even Dr. Tom seemed upset and said to give him a few days and he would see if there was anyone else that would help us. He said that this should be something that should be done without charge. He said that since he had talked to the doctor, several names had come to him that may be of use and he wanted to check them out before we talked to them.

Tim said this was okay, but we felt that the sooner the better as three of the group has lost friends and relatives. I then added that I had lost three friends that had stopped dialysis when their kidneys had caused dialysis. I said that I was not familiar with what had caused one to arrive at his condition until at that point. The third had gone into denial, his kidneys became bad, and he just refused to go to dialysis after the first time. One was not from diabetes, but from an auto accident, which I was told after his death.

Dr. Tom said let him see what he could do and if there was anyone that would speak to us without charging. Allen said we should consider bringing in the other groups and everyone agreed. Dr. Tom said this would be good and was needed and now he would work to find someone to speak to the groups. Dr. Tom asked Tim to call him late Friday if he or Allen had not received a call.

Tim thanked everyone for coming on short notice and for considering this important. He said to keep time available, as this would probably be our March meeting if Dr. Tom was successful. Dr. Tom asked if March 22 or 29 would be acceptable – depending on weather. Everyone agreed and the meeting ended.