Expert: Mary Gordon - 7/9/2010

Question
Hello,
My father is in a nursing home in the UK and is at the end stage of Lewy Body Dementia with Parkinson's. He is cachexic and rarely eats or drinks, however we do get moments of clear appropriate speech. My expectations were that he would lose this as he has all other Stage 7 features. Is this unusual? I know it is a vasiillating condition and he can vary between one visit and the next. We are very grateful that he has retained this but it is very confusing and the doctors have told us that if his current ate of decline continues it will not be long until the end? Such a rollercoaster and I am probably searching for answers that are not there.
Any thoughts would be gratefully received, I think there must be some anomalies that aren't explained with these conditions. He is peaceful and comfortable and we can spend time with him so there are blessing
Thank you
Vanessa

Answer
Hi Vanessa, I know how difficult this phase is - the uncertainty, and the heart break of seeing the person decline. It's one long goodbye and it's painful and gruelling for the family, as you watch and wait. You have the added confusion of the fluctuations so common with Lewy Body. We did see some of those with my mother in law's Alzheimer's. Even in the last stage, the stars would align every now and then, and she'd come out with a coherant statement out of the blue. We'd be amazed after days of garble.

Generally, as you probably know signs that the dementia is winding to its natural end include the wasting and weight loss you are seeing, loss of interest in food and drink, sleeping more and more and being less and less responsive to anything or anyone around them, weakness to the point they have to be propped in bed or a chair or they will flop over (i.e. they can't even hold their head up). They also often start to get opportunistic infections as their immune systems break down.

Signs that death is coming in the next days or weeks are similar but more intensely specific:

Loss of appetite: Energy needs decline. The person may begin to resist or refuse meals and liquids, or accept only small amounts of bland foods (such as hot cereals). Meat, which is hard to digest, may be refused first. Even favorite foods hold little appeal.Near the very end of life, the dying person may be physically unable to swallow.

Excessive fatigue and sleep: The person may begin to sleep the majority of the day and night as metabolism slows and the decline in food and water contribute to dehydration. He or she becomes difficult to rouse from sleep. The fatigue is so pronounced that awareness of immediate surroundings begins to drift.

Increased physical weakness: A decline in food intake and lack of energy leads to less energy, even for activities like lifting one's head or shifting in bed. The person may even have difficulty sipping from a straw.

Mental confusion or disorientation: Organs begin to fail, including the brain, even beyond what has been caused by the dementia. Higher-order consciousness tends to change. The person may not be aware of where he or she is or who else is in the room, may speak or reply less often, may respond to people who can't be seen in the room by others, may seem to say nonsensical things, may be confused about time, or may act restless and pick at bed linens.

Labored breathing: Breath intakes and exhales become raggedy, irregular, and labored. A distinctive pattern called Cheyne-Stokes respiration might be heard: a loud, deep inhalation is followed by a pause of not breathing (apnea) for between five seconds to as long as a full minute, before a loud, deep breath resumes and again slowly peters out. Sometimes excessive secretions create loud, gurling inhalations and exhalations that some people call a "death rattle." This can sound alarming, but the person is not aware of it and doesn't seem to be uncomfortable.

Social withdrawal: As the body shuts down, the dying person may gradually lose interest in those nearby. He or she may stop talking or mutter unintelligibly, stop responding to questions, or simply turn away. A few days before receding socially for the last time, the dying person sometimes surprises loved ones with an unexpected burst of alert, attentive behavior. This can last less than an hour or up to a full day.

Changes in urination: Little going in (as the person loses interest in food and drink) means little coming out. Dropping blood pressure, part of the dying process (and therefore not treated at this point, in tandem with other symptoms), also contributes to the kidneys shutting down. The concentrated urine is brownish, reddish, or tea-colored.

Swelling in the feet and ankles: As the kidneys are less able to process bodily fluids, they can accumulate and get deposited in areas of the body away from the heart, in the feet and ankles especially. These places, and sometimes also the hands, face, or feet, take on a swollen, puffy appearance.

Coolness in the tips of the fingers and toes: In the hours or minutes before death, blood circulation draws back from the periphery of the body to help the vital organs. As this happens, the extremities (hands, feet, fingers, toes) become notably cooler. Nail beds may also look more pale, or bluish.

Mottled veins: Skin that had been uniformly pale or ashen develops a distinctive pattern of purplish/reddish/bluish mottling as one of the later signs of death approaching. This is the result of reduced blood circulation. It may be seen first on the soles of the feet.

Hope this helps. The waiting is both a dreadful and a sacred time - I would suspect that the end is not far away. Take the opportunity, even if you don't think he can hear you - to tell him everything in your heart. You won't regret it. You want to look back at this time and be at peace, knowing you did everything you could both for him, and let him know what he meant to you.

I'm sorry you are going through this. Praying for his easy and gentle release, and thinking of you and your family.

Mary G.
Toronto