When Is ‘Deep Sleep’ – Not?
When one lives with a loved one who has memory loss, their condition becomes so complicated that one has three choices when their condition goes haywire: 1) call a doctor; 2) stop caring; 3) try to figure out what is happening and why.
There is a point in the care of a loved one in decline with dementia, that calling a doctor is no longer your first inclination. How many times can we take the good doctor’s precious time? Certainly not when the patient does not appear to be at risk. But then, perhaps he is and we don’t realize it.
It is hard to stop caring about our loved ones. No matter how old they are or how poorly they are doing, we are their only lifeline. It weighs heavily on the spouse or care-giving child that they are they are solely responsible for another life.
Dementia begins rather benignly, with strange behaviors, memory loss and weird accusations. But with time (usually many years), the caregiver’s brain grows very tired from whatever is assaulting it, and is less inclined to look for solutions. I am watching Hubby sleep longer and longer, on and off throughout the day. But then there are days when he is alert the bulk of the day. What am I not understanding in this behavior?
A number of recent incidents have more than tweaked my curiosity. When our lovely niece and nephew arrived from London to visit Hubby, it was impossible to wake him from a sleep state although he was sitting bolt upright at the dining table. Our niece worked at waking him with cuddles, sweet words, talking to him for almost thirty minutes. It was very upsetting, the idea that they had come all this way, and she might not be able to speak with the only surviving brother of her beloved father, of blessed memory. Suddenly one of her little grandsons belted out a blood-curdling scream (over something inconsequential of course) and Hubby awakened. That was incident number one.
Incident number two: Friends came for luncheon only to find Hubby sitting in the living room, in one of these deep sleep states. He was slumped over and I checked to see if he was breathing. Of course he was, or this would be an entirely different article! He could not be awakened for lunch and was still in the same condition when they left hours later. It was terribly disconcerting, but there was nothing to be done that could have changed any of this.
More than once, when we have tried to take Hubby to Melabev, his day-care club, he has been fine when we placed him in the wheelchair, but by the time we had pushed it down to the end of our block, he was in a deep sleep and could not be roused to go into the taxi which was waiting. On those occasions, we have had to turn the wheelchair around and return home. Two days ago, we had this experience and we could not wake him from the slumber even after we returned home. A half hour later we were successful and we were able to get him to walk up the twelve stairs to our main living floor.
Personal disclaimer. I am not a doctor. But as a journalist, my mind automatically looks for what is behind the obvious. I must mention this as a public service, and I do realize that this is a major digression, but worthy of note:
This week I received a communication from a very handsome General, retired from the US Army, a widower looking for friendship. I was willing to accept his chat on Messenger to see what it was all about. It took me about six chat paragraphs back and forth to realize what was happening. It was not my smile (as he professed) that made him want to know me. He was a scammer hoping to develop a false relationship with me in order to extract money from me. I knew from his incorrect use of the English language that he was not an American General of any sort, and when I asked him about discrepancies in his story, he became angry. Curiously, he told me he was retired but called back to duty in Syria (conveniently close to Jerusalem). I later discovered that others have been duped in his scheme. I was quite proud of myself for “sussing him out” in about ten minutes. Humbly, I provide this as proof of my detective abilities in murky cases of contradictions and confusion. The very idea that I would waste even ten minutes on this experience is indicative of the loneliness that sets in for the spouse caring for their loved one, who is no longer able to share in the marriage.
Back to Hubby. I would like to share my conclusions only in order to open the minds of others caring for the elderly, with or without dementia. The deep sleeps that Hubby has been experiencing come on very quickly. One moment he is perky and then suddenly he is almost comatose. Once in these mental states he is non-responsive, but definitely breathing, becoming quite irritable if we try to wake him. Sometimes he actually says “I keep falling asleep.” He cannot awaken. It is not that he does not want to wake up, but that he is unable to do so.
My conclusion… once again based on nothing but instinct and looking at these patterns of behavior… is that these are a form of small TIA’s (Transitory Ischemic Attacks), or mini strokes. Our private doctor has just visited Hubby and it looks like I am wrong again. He thinks that it is possibly a form of narcolepsy, and has told me how to discover whether it is or is not.
The test requires inflicting a bit of pain on the person who is asleep. It is not a comfortable idea, however if you pinch someone’s neck or shoulder area when they are in a normal sleep state, they will awaken. If in a narcoleptic state, they will not respond. I have not tried the pain test as of yet.
What became apparent to me, is that in spite of what I consider my vast understanding of all the things that can go wrong with a patient who has dementia, there are far more than I ever knew. That is why we call doctors we respect and discuss behaviors that are irregular. Just because we have no solution does not mean that there is not one available. That is what my English professor used to call a “double negative.” Two negatives equal a positive in a sentence. I am digressing again… sorry.
In my online consulting, giving advice to individuals I have never met somewhere in the world, I have become aware of how many people with dementia are ignored by the medical professionals. It can be that the family members are unwilling to take their loved one to a doctor. That can be the result of protestations from the patient themselves that nothing is wrong with them, and that they don’t want to see a doctor or be given medications. Of course, the problem with that reason, is that the patient is actually in no condition to assess the benefits which might await him/her with proper medical attention. Then there are people who are simply overwhelmed by the financial costs of caring for their loved one, and looking to avoid more bills and debt. These situations are both difficult, but can be worked around in most cases
One of the most distressing situations which I see repeating in many locations, is the family which takes Mom or Dad, Husband or Wife to a general practitioner who responds that their loved one does not have dementia but is having normal age-related memory loss due to hardening of the arteries. That is a charming catch-all-phrase which means very little. This response from a doctor tells me that the doctor is too lazy to give the standardized tests to the patient, but even worse than that, the doctor is not hearing the very real concerns of the family members. A half-hour doctor appointment is not as conclusive as living with an individual 24/7. My suggestion to anyone who has the misfortune to come under a doctor with a laissez-faire attitude, is simply to find another doctor. My first choice would be a geriatrician as they specialize in the aging process and will recognize when there are very real concerns which must be addressed. If that specialists feels there are areas of concern, the patient might be referred to a neurologist. Personally, that is not where I feel the process should begin when selecting with whom to have the initial appointment.
Caring for a loved one with memory loss requires a pro-active approach. When there are problems – and there will be many – they need to be resolved. Some are simple, others complex. But nothing that we are concerned about is new to the specialist. Their insight is beyond valuable in helping us to improve the quality of the life of our loved one, and for ourselves.
