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Expert Blog

Training for the masses

December 29, 2015

Anyone who has cared for and loved someone with dementia knows all too well that the whole world needs education and training when it comes to dealing with this disease.

This point was proven once again by Jim’s urologist and his staff. From the very first appointment, I was acutely aware they were ill equipped to handle him with the grace and understanding he needs. But with his most recent visit (and his last to their office) I could no longer accept their inability to treat him quickly and in a way that would make the visit a smooth one.

Jim has been having bladder issues for a few months now. Catheter in. Urinary Tract Infections. Antibiotics. The same cycle each week.

I won’t go into a lot of details, but the urologist kept commenting on how young Jim was to have Alzheimer’s Disease during our first visit. In front of Jim. While he was examining him. Like Jim couldn’t hear him.

Like we need another doctor and medical expert to tell us what we already know. He also made a few other comments. They were the typical ones, but you just don’t expect to hear them from your physician. The worst part was when he went to give Jim a prostate exam and didn’t warn him or explain what was about to happen. He was lucky Jim didn’t turn around and sock him.

This last visit was to try to figure out if there is a problem with Jim’s bladder. When I made the appointment, I asked how long it would be because our son had a counseling appointment two hours later. I was told that wouldn’t be a problem. Jim would be first after lunch and it should only take about 20 minutes. I was feeling good because I actually arrived to their office ten minutes early which never happens these days.

They removed his catheter and told me it would be a 20 minute wait in the waiting area. No problem. After 45 minutes, I went up to the nurse and asked if she had forgotten about Jim. She told me “No, we are just really busy. We have three doctors in the office today.” I reminded her he had been waiting twice as long as they had said and he couldn’t sit out in the waiting area much longer. She told me she would see what they could do.

A full 5 minutes later, they call us. We both get up, and she stands at the door and tells me she isn’t calling us to go back, but to just inform me they are backed up and can’t see him yet. I reminded her that our son had a counseling appointment in what was now 45 minutes and I still needed to get Jim back to his place, pick our son Brad up from school and drive him to his appointment. No empathy in any way shape or form. I was done.

I told them to put the catheter back in Jim and we would find a new doctor. So that is where we are. Searching for a doctor and staff who actually understand and care about patients who cannot advocate and speak up for themselves. There is much that needs to be done, and I certainly think some training for all medical staff would be a good start.

Thoughts and stories from others

  1. January 5, 2016 at 10:33 am
    Posted by Laurie

    It never ceases to amaze me that medical "professionals" have no training in treating Alzheimers or dementia patients. New eye doctor for my husband - nurse was terrific, keeping him engaged and being patient and efficient. The eye doctor talked around him (literally) to me and acted as though he was invisible.
  2. January 4, 2016 at 11:48 pm
    Posted by Diane

    Too often this happens either to lack of education or lack do time due to over-booking. Family members must be vigilant and advocate at all times for their loved ones at physician's office and at hospitals. Make them listen to you - you know your family member/spouse better than anyone and don't let them do anything without your permission. Dementia, brain injuries and more are not handled to the extent they need to be. Comfort should be paramount! Find physicians who understand. Referrals from your neurologist will be beneficial.
  3. January 4, 2016 at 01:33 pm
    Posted by Diana

    Continued Said I was making a formal complaint and suddenly they gave him yogurt and he could swallow it. The NHS funded his care home place and we had a Vulnerable Adult Procedure against the hospital. i wasn't allowed to hear it all - but later got the file and found they were trying to blame ME for wanting perfection!
  4. January 4, 2016 at 01:29 pm
    Posted by Diana

    My 50s husband was admitted to hospital with acute constipation. A speech therapist assessed him when I wasn't there and said he had "an abnormality in his throat" and couldn't swallow so NIL BY MOUTH. Tubes were inserted which he pulled out. He was desperately thirsty and unable to understand what was happening. No one would listen to me. I was told I'd have to wait till he was reassessed (which was done over the phone!) I was the asked for my permission to peg feed which I'd already discussed with his GP and we'd decided no.
  5. December 30, 2015 at 09:14 pm
    Posted by Mattie

    I am the caregiver for my 64 year old husband who has survived several strokes and has some stroke induced dementia at times but can appear to be fine at other times. The line ' they were ill equipped to handle him with the grace and understanding he needs' hit home hard for me. You have very eloquently put into words something that I have observed over and over again. Not just with medical personnel, but also with home care providers, families and friends. Best of luck to you in your search.

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