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Journal – September 2017
Donna is finally scheduled to have her molar extracted on October 6th. That’s 78 days from her first telling me she has a sore tooth. Phileas Fogg required just two more days to manage his voyage around the world, according to Jules Verne, and that was without benefit of airplane. Surely, it doesn’t take as long to extract a decayed tooth. September begins with me, once again, boiling over at the height of my anxieties. As I lie in bed at night, I think of all the things I have been through to try and ensure that Donna remains as comfortable as possible...and it makes me angry seeing how much confrontation, how many stone walls I have met along the way. Is it wrong for me to expect our health-care system to be capable of managing a thing as simple as a decayed molar? Why am I, a seventy-six year old lay person with no medical training, with hyper-tension and blood-pressure issues of my own, expected to solve these problems? |
DONNA'S
STORY 
I made this for you, John
|
As a result of my anger, I write a long, scathing letter to George Derby management. Their response is immediate! Within fifteen minutes of delivery of my letter we are all in conference to discuss my concerns. My letter stresses that I am concerned about missing or broken procedures, not that I find any specific individual at fault.
In fact, I want to seriously offer my thanks for George Derby management’s reaction. Absolutely every person whose path I cross in this saga has been both empathetic and helpful. From the struggles of Marlene and Doris in ‘Special Care’ in helping me find and work with an appropriate dental surgeon, to the rapid intercession of Leo, the ‘Director of Care’, and his promises of forthcoming procedural improvements. To all the professionals; doctors, nurses, administrators and care-aides with whom I have spoken, including those of you who have willingly lent me your sympathetic ear, I thank you.
I also thank Dr. Dana Herberts and all the staff at his dental practice. You have helped me overcome my stress and have eased the path to Donna’s care. I particularly want to thank Sandy, whom I have never met. Sandy! You understand the difficulties of managing these events with dementia patients. You somehow found a way to alter the very early appointment times for Donna’s consultation and surgery. It would have been a near impossible task to waken Donna, get her up and dressed at five AM, in order to make a hospital appointment at seven. Donna simply wouldn’t understand the need.
On the 30th of September, I am told it will be necessary to bring Donna to Eagle Ridge Hospital for a preliminary ‘consultation only’ meeting with an anaesthetist to assess her. The meeting is required and cannot be satisfied without Donna’s presence. When I protest, I am told that, without this personal assessment, the surgery will not proceed.
I am at the end of my tether. I don’t have transport nor a companion to accompany us for the preliminary meeting. I don’t sleep for the following two nights, so I decide to give up, cancel the whole plan, hand everything back to George Derby and back away from the problem. I can’t deal with this anymore.
Donna’s Care Coordinator, Doris steps in, as does Sandy at Dr. Herbert’s office, and together they convince me to take Donna to the preliminary meeting. Our friend Marylynn also steps in and offers to accompany us as Donna’s companion.
I come back to reality and think of Donna. Of course I’ll take her. It’s a little complicated arranging trips up and back in my car, Marylynn riding ‘shotgun’ on the outward journey, and Peter for the return trip. Thank you both! Donna, Marylynn and I attend the meeting on October 4th. Much as I disapprove of the process, our meeting with the nurse and the anaesthetist go well. Both are understanding and offer comfort to me. Donna needs no special comfort. She is happy and chatty and, naturally, has no understanding of what is taking place.
Neither the nurse, nor the anaesthetist who interview me, will be those in attendance on the day of surgery but I am not here to upset the apple-cart, I’m here to get Donna’s tooth problems fixed. As expected, I answer all the necessary questions and provide the latest medical documents from George Derby. It is NOT necessary for Donna to be present.
It is now October sixth. My sister Sandy and I accompany Donna from George Derby to Eagle Ridge Hospital and back where, in truth, two decayed molars are found and extracted. This event is managed with absolute minimum anxiety for an already super-charged Donna. She suffers very little trauma; mainly fear of falling while getting into and out of the car, again when trying to get off the operating bed, up and dressed for the ride home.
The surgery programme requires all day but we are home again by five PM when Doris takes on the job of helping Donna through the rest of her day – a one-on-one level of care to ensure no more falls due to unforeseen drug interactions.
I owe a special thanks to my sister Sandy, who was such a help keeping both Donna and me calm on this day.
Despite my dismay over the need for a preliminary meeting, I do not forget the extraordinary care offered by all those we meet at Eagle Ridge Hospital. I don’t remember your names, but for your understanding of how to soothe anxieties in Donna (and me), I thank you!
Donna is now back home at George Derby. She is happy, still singing her songs, tapping her feet, and is pleased to meet everyone who visits. She calls to everyone she sees. If you hear someone calling, “Uncle John?” you’d best answer because, that is Donna’s generic call to attract the attention of everyone – not just me. If you don’t respond, her call will just get louder and louder. And, if you stray too close, she will grasp your hand tightly and start talking to you with a huge smile on her face. You might have a little trouble getting disentangled because she has a lot to tell you.
But the saga of these past two months has seen some changes. Donna now gnashes her teeth all the time – like she’s chewing gum. This might be a result of her dental issues and will possibly disappear over time. But maybe not. She is also a little more afraid of falling, particularly if you try to help her to her feet. Left to her own devices, she still gets up easily but slowly, and walks everywhere she wants to go. She hasn’t learned to use her feet to peddle herself forward in her wheel chair. She can only peddle backwards.
Donna has lost a noticeable amount of weight this summer. I thought it might be related to the dental issues but the experts tell me that possibly not. It is one of the stages of Alzheimer’s and, if Donna chooses not to eat, that is her choice. Perhaps she just isn’t hungry. There is no mandate to force feed. At her care-conference back in January, this kind of thing was discussed, and I signed off on the level of care proposed. I notice that several other residents are also losing weight for the same reasons – they choose not to eat.
I must consider these realities. Donna is waning! That is understood. But it is one thing to understand the general concept of decline, and another thing to witness its effect through specific actions – or non-actions – of someone you love. It’s the watching without being able to help that hurts the most.
-----
Now that Donna’s extractions have taken place; now that I have had some time to calm down and view these 78 days a little more objectively, I want to close September’s journal by summarizing my views on the above dental saga.
Everybody involved in the process deserves high praise for their help and understanding. While I am happy with the actions of the people who helped Donna and me through this process, the basic system has cracks that need fixing. Procedures are missing, but not just at George Derby.
Our national health-care system provides a procedure for managing an emergency medical issue – such as a broken arm – or nearly anything else you can imagine. The patient is whisked off to the Emergency Department at a local hospital where the arm is treated and the patient is sent home that same day.
No such procedure exists for a dementia patient with dental issues. There is seemingly no understanding that some dementia patients will not open their mouths to permit the use of dentist’s tools – particularly anaesthetic needles. This lack of understanding is a factor of ‘The System’ itself, not the individuals who work within the system.
A few times during September, I considered just taking Donna to a nearby Emergency Department but am told that it is probable they would send her back, untreated.
I would like to see some changes; some new, or improved procedures.
First: The search for an appropriate dentist to undertake Donna’s extraction should not have fallen on me. George Derby should have a clear cut procedure in place. Without such procedure, they should have leapt into action to solve their problem.
Second: Our national health-care system needs to recognize that every residential care-home needs to have procedures in place for the handling of dementia patients – procedures that tie in directly with their nearest serving hospital – so that all issues can be resolved expeditiously.
Third: The requirement for ‘consultation only’ meetings needs review. If such a meeting is truly necessary, and I don’t see that it is, perhaps such a meeting should be done at the patient’s care facility without the need to disrupt anyone for transport to other locations. I agree that the doctors in this chain-of-events need latest medical information – obtainable from the care institution. They also need to see the family member who has the authority to speak and act on behalf of the patient, and offer some history. None of these needs can be fulfilled by the dementia patient.
In fact, I want to seriously offer my thanks for George Derby management’s reaction. Absolutely every person whose path I cross in this saga has been both empathetic and helpful. From the struggles of Marlene and Doris in ‘Special Care’ in helping me find and work with an appropriate dental surgeon, to the rapid intercession of Leo, the ‘Director of Care’, and his promises of forthcoming procedural improvements. To all the professionals; doctors, nurses, administrators and care-aides with whom I have spoken, including those of you who have willingly lent me your sympathetic ear, I thank you.
I also thank Dr. Dana Herberts and all the staff at his dental practice. You have helped me overcome my stress and have eased the path to Donna’s care. I particularly want to thank Sandy, whom I have never met. Sandy! You understand the difficulties of managing these events with dementia patients. You somehow found a way to alter the very early appointment times for Donna’s consultation and surgery. It would have been a near impossible task to waken Donna, get her up and dressed at five AM, in order to make a hospital appointment at seven. Donna simply wouldn’t understand the need.
On the 30th of September, I am told it will be necessary to bring Donna to Eagle Ridge Hospital for a preliminary ‘consultation only’ meeting with an anaesthetist to assess her. The meeting is required and cannot be satisfied without Donna’s presence. When I protest, I am told that, without this personal assessment, the surgery will not proceed.
I am at the end of my tether. I don’t have transport nor a companion to accompany us for the preliminary meeting. I don’t sleep for the following two nights, so I decide to give up, cancel the whole plan, hand everything back to George Derby and back away from the problem. I can’t deal with this anymore.
Donna’s Care Coordinator, Doris steps in, as does Sandy at Dr. Herbert’s office, and together they convince me to take Donna to the preliminary meeting. Our friend Marylynn also steps in and offers to accompany us as Donna’s companion.
I come back to reality and think of Donna. Of course I’ll take her. It’s a little complicated arranging trips up and back in my car, Marylynn riding ‘shotgun’ on the outward journey, and Peter for the return trip. Thank you both! Donna, Marylynn and I attend the meeting on October 4th. Much as I disapprove of the process, our meeting with the nurse and the anaesthetist go well. Both are understanding and offer comfort to me. Donna needs no special comfort. She is happy and chatty and, naturally, has no understanding of what is taking place.
Neither the nurse, nor the anaesthetist who interview me, will be those in attendance on the day of surgery but I am not here to upset the apple-cart, I’m here to get Donna’s tooth problems fixed. As expected, I answer all the necessary questions and provide the latest medical documents from George Derby. It is NOT necessary for Donna to be present.
It is now October sixth. My sister Sandy and I accompany Donna from George Derby to Eagle Ridge Hospital and back where, in truth, two decayed molars are found and extracted. This event is managed with absolute minimum anxiety for an already super-charged Donna. She suffers very little trauma; mainly fear of falling while getting into and out of the car, again when trying to get off the operating bed, up and dressed for the ride home.
The surgery programme requires all day but we are home again by five PM when Doris takes on the job of helping Donna through the rest of her day – a one-on-one level of care to ensure no more falls due to unforeseen drug interactions.
I owe a special thanks to my sister Sandy, who was such a help keeping both Donna and me calm on this day.
Despite my dismay over the need for a preliminary meeting, I do not forget the extraordinary care offered by all those we meet at Eagle Ridge Hospital. I don’t remember your names, but for your understanding of how to soothe anxieties in Donna (and me), I thank you!
Donna is now back home at George Derby. She is happy, still singing her songs, tapping her feet, and is pleased to meet everyone who visits. She calls to everyone she sees. If you hear someone calling, “Uncle John?” you’d best answer because, that is Donna’s generic call to attract the attention of everyone – not just me. If you don’t respond, her call will just get louder and louder. And, if you stray too close, she will grasp your hand tightly and start talking to you with a huge smile on her face. You might have a little trouble getting disentangled because she has a lot to tell you.
But the saga of these past two months has seen some changes. Donna now gnashes her teeth all the time – like she’s chewing gum. This might be a result of her dental issues and will possibly disappear over time. But maybe not. She is also a little more afraid of falling, particularly if you try to help her to her feet. Left to her own devices, she still gets up easily but slowly, and walks everywhere she wants to go. She hasn’t learned to use her feet to peddle herself forward in her wheel chair. She can only peddle backwards.
Donna has lost a noticeable amount of weight this summer. I thought it might be related to the dental issues but the experts tell me that possibly not. It is one of the stages of Alzheimer’s and, if Donna chooses not to eat, that is her choice. Perhaps she just isn’t hungry. There is no mandate to force feed. At her care-conference back in January, this kind of thing was discussed, and I signed off on the level of care proposed. I notice that several other residents are also losing weight for the same reasons – they choose not to eat.
I must consider these realities. Donna is waning! That is understood. But it is one thing to understand the general concept of decline, and another thing to witness its effect through specific actions – or non-actions – of someone you love. It’s the watching without being able to help that hurts the most.
-----
Now that Donna’s extractions have taken place; now that I have had some time to calm down and view these 78 days a little more objectively, I want to close September’s journal by summarizing my views on the above dental saga.
Everybody involved in the process deserves high praise for their help and understanding. While I am happy with the actions of the people who helped Donna and me through this process, the basic system has cracks that need fixing. Procedures are missing, but not just at George Derby.
Our national health-care system provides a procedure for managing an emergency medical issue – such as a broken arm – or nearly anything else you can imagine. The patient is whisked off to the Emergency Department at a local hospital where the arm is treated and the patient is sent home that same day.
No such procedure exists for a dementia patient with dental issues. There is seemingly no understanding that some dementia patients will not open their mouths to permit the use of dentist’s tools – particularly anaesthetic needles. This lack of understanding is a factor of ‘The System’ itself, not the individuals who work within the system.
A few times during September, I considered just taking Donna to a nearby Emergency Department but am told that it is probable they would send her back, untreated.
I would like to see some changes; some new, or improved procedures.
First: The search for an appropriate dentist to undertake Donna’s extraction should not have fallen on me. George Derby should have a clear cut procedure in place. Without such procedure, they should have leapt into action to solve their problem.
Second: Our national health-care system needs to recognize that every residential care-home needs to have procedures in place for the handling of dementia patients – procedures that tie in directly with their nearest serving hospital – so that all issues can be resolved expeditiously.
Third: The requirement for ‘consultation only’ meetings needs review. If such a meeting is truly necessary, and I don’t see that it is, perhaps such a meeting should be done at the patient’s care facility without the need to disrupt anyone for transport to other locations. I agree that the doctors in this chain-of-events need latest medical information – obtainable from the care institution. They also need to see the family member who has the authority to speak and act on behalf of the patient, and offer some history. None of these needs can be fulfilled by the dementia patient.
