Post by norbert1 on Jun 28, 2006 9:45:57 GMT -5
{{{ looking for an answer, what next? (herebonyeyes) My grandmother who has just turned 81 is in the late stages of Alzheimers, my mother (her daughter) moved my grandmother and her husband of 20 years from their home in Montana to her family home in Washington. my grandmother has declined quite a bit, nobody can tell us what to expect next, she has slowed down as far as everything goes, her walking is minimal,her eating is decreasing daily, she does't want to eat and fights to keep the food away, she tries very hard to talk but the words never find their way out they are jibberish , her comprehension is totally gone, she has to be sat down, she has been constipated and we have done everything to help her and get minimal results, she has lost over 5 pounds in the last 2 weeks, and everyday day I see her she seems more child like in her actions, I can sit her in a chair and rock it and she rocks to sleep, she is totally spoon fed she can't hold the spoon long enough to get it to her mouth, and when she does get the food or drink into her mouth she spits it out or talks and it falls out she is not understanding swallow, she holds it in her mouth then spits it out. there aren't enough books or doctors to find answers, I just need to see if there is anybody out there that has experienced this and could possibly tell me and my mother what’s to come next, please. much thanks. - B. }}}
Your local Alzheimers Association chapter should offer training sessions in late stage caregiving. These sessions cover many of these issues. Check out the spring or fall schedule to see if one of these sessions is available to you.
A hallmark of stage 7 is losing the ability to walk with out assistance. Later, the person will not be able to walk at all. So care at this stage centers on nursing procedures such as transfers and care of a bed or chair bound person.
You might check with the Red Cross. They are supposed to have caregiver training available. (something I have not yet confirmed.) The local alzheimers association usually offers a training series on late stage care. The doctor may be able to prescribe limited Homecare that will teach you some of these nursing skills. Learning proper transfer techniques are especially important.
Other care issues:
Incontinence (and constipation)
altering diet when intake is reduced
change of food consistency needed when swallowing or chewing becomes difficult.
Care of the bed bound person - bathing, eating, bed sore prevention.
Swallowing Difficulties – One swallowing difficulty is that they forget to swallow. They need to be verbally cued – to open, chew and swallow. Cueing is helped by moving the persons chin in a chewing motion to get it started, or by stroking the throat to encourage swallow.
Physical swallowing difficulties means that liquids need to the increasingly thickened. Thickening is required as the swallowing reflex becomes impaired. Thicknesses are described as nectar, honey, and pudding. Thicker consistency of liquids is needed as swallowing becomes impaired.
Food refusal can take a number of forms - refusal (clenched teeth, turning head), pocketing, spitting out.
Pocketing – A person who pockets needs to be switched to pureed food. (One factor, chewing becomes too difficult, tiring, or difficult to maintain attention long enough to chew.)
Spitting out – A person is more likely to spit out vegetables than desert items. When there is food refusal, it is time to switch to favorite foods and desert type items. It is time to drop dietary restrictions and not worry about a "balanced" diet. At this time the primary issue is calories. Augment intake with nutritional supplements.
Hydration is always important in all stages, if unable to chew, purreed foods, supplemental shakes(ensure or boost, add milk and ice cream for milkshakes)
In very late stage, the person may exist entirely of nutritional drinks. For swallowing, these can be thickened with baby cereal and augmented with protein powder.
Constipation becomes a major problem. The major issues causing it are lack of mobility, poor hydration, and the reduced motility of the intestines as the body is shutting down. The usual recommendation (for people without dementia) is to increase fiber content. But with poor hydration, fiber can contribute to constipation. A number of prune items are often recommended, such as fiber/prune muffins, and prune pudding (check with the Alzheimer’s Association for recipes.) Fecal impaction is difficult and dangerous. Enemas when needed can prevent major consequences of constipation. This entire issue is worth discussing with your grandmother’s physician. But maintaining level of hydration is very important.
If the person is bed bound, you have to be concerned about bedsores. They have air mattresses to put on the beds to help eliminate bed sores.
If they can not move themselves you must turn every 2 hours. Good skin care becomes critical. It is very difficult to get pressure ulcers to heal, so prevention is worth the effort.
Activities and quality of life issues change at this point. Skin care provides an opportunity for interaction (massage of hands and arms and applying hand lotion). Music, reading and continued social contact with love is a necessity. Conversations become one sided but are meaningful for your LO. Respond to the emotion they manage to express.
Hospice criteria - A person with dementia generally qualify for Hospice (based solely on the dementia) when they can no longer walk unaided by others, there has been major weight loss (10% in 6 months), language restricted to use of one word per day and having a major infection in the past year (respiratory, urinary, etc). A person with inadequate nutrition because not eating is definitely a candidate.
People meeting these criteria will not necessarily die within 6 months, but on average – a prognosis of 6 months or less is likely.
Treating chronic conditions-
Choosing Hospice means the person will receive aggressive attention aimed at comfort. Chronic health conditions often are continued to be treated in the interest of comfort. You need to check this out with the hospice. (especially when the chronic condition is not the admitting criteria.) However aggressive medical treatment is discontinued, so laboratory tests and hospitalization are generally out (unless arranged for by hospice).
The benefits of hospice – weekly visit from nurse, 24 hour access to medical help and advice, aggressive attention to comfort, providing medical equipment and scheduled care from health aids. With Hospice, your grandmotherss level of care is going to be much better.
It has been observed that people in hospice do better and seem to live longer - because they get better care, better pain relief and better treatment of symptoms.
Please note - If a person is admitted to hospice care on the basis of dementia, Medicare will still pay for treatment of other medical conditions.
From the Medicare booklet "Medicare Hospice Benefits, A special way of caring for people who have a terminal illness"----
"You continue to use your Medicare plan to get care for any health problems that aren't related to your terminal illness."
-----------------------
Alice adds the following information (edited for order by Norbert)
Is your LO still able to shower? You may need a shower chair and grab bar for safety. And a soft colored mat helps with their stepping into the shower as a white floor makes them feel as if they are falling as they have no perception of depth. And that fear will cause them to fight taking a shower. You will eventually have to do bed baths.
You may eventually need a hospital bed for easier care. My husband would not stay in a hospital bed he tried to climb out the first day. He needed to feel me close to him...that brought him comfort and a feeling of security. I had them put him back in his bed and got a sleep number bed for him. I could raise and lower his head and legs and it had an air mattress to prevent bed sores. I placed it toward a window so he could see his birds, trees and flowers. I put bird feeders on his window.
The bed also helped with feeding him and bringing him to a sitting position on the side of the bed while he was still able to be in a sitting position. The insurance or medicare does not help with this expense. (the special bed). It may cover the renting of a hospital bed and other equipment needs if ordered by his doctor. For others who have medicare it does cover the renting of wheel chairs, hospital bed, shower chairs,commode raisers, bedside commodes et.
Hospice care is there for you the last stage. For 8 months they came 3 mornings a week (around 2 hours)to help with bathing and the RN came to check vitals once or twice a week.. The last 10 days they came every day for bathing and the RN was there all day the last day. They are on call 24/7 so that is a blessing. I loved our Hospice family. (Hospice is very good about providing needed medical equipment including hospital bed and mattresses for prevention of bed sores.)
Learning the proper way to move your LO from one side to the other using a large bed pad is very important so as not to injure yourself or your loved one.. The Hospice nurse showed me this procedure and I was able to do this with no discomfort to my husband. And I never injured my back much to my children's amazement. They will also teach you how to change the bed and his diapers. It just became part of his daily care and comfort and I never give it a second thought.
Also early in the 7th stage my husband begin to fall more frequently. There is a way to fall with them to prevent injury to either one of you. A RN taught me this procedure. There are also gait safety belts to help get them up and to hold on to while guiding them to walk. The belt has to be applied correctly so as not to cause injury to the loved one. There is still some danger in hurting your self while helping with the walking and getting up, et.
I don't know if your LO is incontinent as that in itself is a big task. To keep him clean and dry. I found the Sween products very good for keeping the peri area clean and free from Bacteria. They have a no rinse body wash that is good for cleansing of this area between baths. You will need large supplies of the synthetic exam gloves, large wipes and other necessities for his daily comfort. I found the very large wipes for the handicap very good for cleaning the perianal area. If there was any redness in the perianal area I would apply small amounts of the critic-aid cream. Their creams are also very good to prevent bedsores. When I would see a red spot on his body I would apply Sween cream. He never had any bed sores. Turning every 2 hours helps prevent bed sores also and raising and lowering his bed to take the pressure off different areas of the body... (and “turning” from side to side and supporting in the turned position with pillows.)
In the last 3 months of the 7th stage my husband no longer had the function of his bowels and I had to administer every 3 days what are called ..Enemeez..that is between a suppository and a enema. The Enemeez's are used with paraplegics and produce a normal bowel movement without discomfort to the loved one. This loosing ones ability to have a bowel movement will likely occur with all dementia patients at the end stage. This was also a very important part of his care keeping him free of any discomfort he might have with his bowels. (Constipation occurs in the end stages. It is also caused when drugs like morphine are used, so this is a issue that Hospice is very vigilant about.)
When he could no longer swallow Meds had to be crushed and put in ice cream or applesauce. Eventually we went from soft food to nutritional shakes such as ensure which I always added a mashed banana or ice cream as they don't taste very good at all. Toward the end his meds were made in a gel form to rub into the pulse areas. The last days I could only give him spoons of crushed ice every 2 hours and swab his mouth out. That was the most difficult time of all but his lungs stayed clear with no pneumonia so no pain from that.
Eventually the digestive system, pulmonary system and other body functions begin to shut down as their is more deterioration of the brain due to AD. He started having a fever with the change in the disease process and the brains inability to fire as it should and was put on tylenol for comfort measures..The next to last month he had neurological changes in temperature, small seizures and 15 to 20 seconds apnea episodes. All very difficult for both of us.
You will be sleep deprived and that is hard. My body got so use to 4 hours of sleep that it still thinks that's all it needs. Some people might feel depressed, isolated, physically and emotionally drained or just too overwhelmed to carry on. some physical needs are much greater with a different loved one. That is why it is a good idea to do a search of NH in your area and put their name on the long waiting list if the time arrives when one is no longer able to give the care that is needed. I did this but thankful I did not have to place my Jerry. But if I would have I knew he would get good care in these 2 facilities that I choose and that was a sense of peace.
Playing instrumental music brought a peaceful atmosphere, sharing stories of family and their love for him and he was always surrounded with love, smiles and laughter. From his smile and the touch of his hand I felt my Jerry knew us until the end and felt very loved.
Prayer got me through and seeing the love in my Jerry's eyes and his sweet smile as I cared for him. So many nights I laid my head down on my pillow and thought I could not go another day but my strength was renewed each morning.
----------------
Norbert
Your local Alzheimers Association chapter should offer training sessions in late stage caregiving. These sessions cover many of these issues. Check out the spring or fall schedule to see if one of these sessions is available to you.
A hallmark of stage 7 is losing the ability to walk with out assistance. Later, the person will not be able to walk at all. So care at this stage centers on nursing procedures such as transfers and care of a bed or chair bound person.
You might check with the Red Cross. They are supposed to have caregiver training available. (something I have not yet confirmed.) The local alzheimers association usually offers a training series on late stage care. The doctor may be able to prescribe limited Homecare that will teach you some of these nursing skills. Learning proper transfer techniques are especially important.
Other care issues:
Incontinence (and constipation)
altering diet when intake is reduced
change of food consistency needed when swallowing or chewing becomes difficult.
Care of the bed bound person - bathing, eating, bed sore prevention.
Swallowing Difficulties – One swallowing difficulty is that they forget to swallow. They need to be verbally cued – to open, chew and swallow. Cueing is helped by moving the persons chin in a chewing motion to get it started, or by stroking the throat to encourage swallow.
Physical swallowing difficulties means that liquids need to the increasingly thickened. Thickening is required as the swallowing reflex becomes impaired. Thicknesses are described as nectar, honey, and pudding. Thicker consistency of liquids is needed as swallowing becomes impaired.
Food refusal can take a number of forms - refusal (clenched teeth, turning head), pocketing, spitting out.
Pocketing – A person who pockets needs to be switched to pureed food. (One factor, chewing becomes too difficult, tiring, or difficult to maintain attention long enough to chew.)
Spitting out – A person is more likely to spit out vegetables than desert items. When there is food refusal, it is time to switch to favorite foods and desert type items. It is time to drop dietary restrictions and not worry about a "balanced" diet. At this time the primary issue is calories. Augment intake with nutritional supplements.
Hydration is always important in all stages, if unable to chew, purreed foods, supplemental shakes(ensure or boost, add milk and ice cream for milkshakes)
In very late stage, the person may exist entirely of nutritional drinks. For swallowing, these can be thickened with baby cereal and augmented with protein powder.
Constipation becomes a major problem. The major issues causing it are lack of mobility, poor hydration, and the reduced motility of the intestines as the body is shutting down. The usual recommendation (for people without dementia) is to increase fiber content. But with poor hydration, fiber can contribute to constipation. A number of prune items are often recommended, such as fiber/prune muffins, and prune pudding (check with the Alzheimer’s Association for recipes.) Fecal impaction is difficult and dangerous. Enemas when needed can prevent major consequences of constipation. This entire issue is worth discussing with your grandmother’s physician. But maintaining level of hydration is very important.
If the person is bed bound, you have to be concerned about bedsores. They have air mattresses to put on the beds to help eliminate bed sores.
If they can not move themselves you must turn every 2 hours. Good skin care becomes critical. It is very difficult to get pressure ulcers to heal, so prevention is worth the effort.
Activities and quality of life issues change at this point. Skin care provides an opportunity for interaction (massage of hands and arms and applying hand lotion). Music, reading and continued social contact with love is a necessity. Conversations become one sided but are meaningful for your LO. Respond to the emotion they manage to express.
Hospice criteria - A person with dementia generally qualify for Hospice (based solely on the dementia) when they can no longer walk unaided by others, there has been major weight loss (10% in 6 months), language restricted to use of one word per day and having a major infection in the past year (respiratory, urinary, etc). A person with inadequate nutrition because not eating is definitely a candidate.
People meeting these criteria will not necessarily die within 6 months, but on average – a prognosis of 6 months or less is likely.
Treating chronic conditions-
Choosing Hospice means the person will receive aggressive attention aimed at comfort. Chronic health conditions often are continued to be treated in the interest of comfort. You need to check this out with the hospice. (especially when the chronic condition is not the admitting criteria.) However aggressive medical treatment is discontinued, so laboratory tests and hospitalization are generally out (unless arranged for by hospice).
The benefits of hospice – weekly visit from nurse, 24 hour access to medical help and advice, aggressive attention to comfort, providing medical equipment and scheduled care from health aids. With Hospice, your grandmotherss level of care is going to be much better.
It has been observed that people in hospice do better and seem to live longer - because they get better care, better pain relief and better treatment of symptoms.
Please note - If a person is admitted to hospice care on the basis of dementia, Medicare will still pay for treatment of other medical conditions.
From the Medicare booklet "Medicare Hospice Benefits, A special way of caring for people who have a terminal illness"----
"You continue to use your Medicare plan to get care for any health problems that aren't related to your terminal illness."
-----------------------
Alice adds the following information (edited for order by Norbert)
Is your LO still able to shower? You may need a shower chair and grab bar for safety. And a soft colored mat helps with their stepping into the shower as a white floor makes them feel as if they are falling as they have no perception of depth. And that fear will cause them to fight taking a shower. You will eventually have to do bed baths.
You may eventually need a hospital bed for easier care. My husband would not stay in a hospital bed he tried to climb out the first day. He needed to feel me close to him...that brought him comfort and a feeling of security. I had them put him back in his bed and got a sleep number bed for him. I could raise and lower his head and legs and it had an air mattress to prevent bed sores. I placed it toward a window so he could see his birds, trees and flowers. I put bird feeders on his window.
The bed also helped with feeding him and bringing him to a sitting position on the side of the bed while he was still able to be in a sitting position. The insurance or medicare does not help with this expense. (the special bed). It may cover the renting of a hospital bed and other equipment needs if ordered by his doctor. For others who have medicare it does cover the renting of wheel chairs, hospital bed, shower chairs,commode raisers, bedside commodes et.
Hospice care is there for you the last stage. For 8 months they came 3 mornings a week (around 2 hours)to help with bathing and the RN came to check vitals once or twice a week.. The last 10 days they came every day for bathing and the RN was there all day the last day. They are on call 24/7 so that is a blessing. I loved our Hospice family. (Hospice is very good about providing needed medical equipment including hospital bed and mattresses for prevention of bed sores.)
Learning the proper way to move your LO from one side to the other using a large bed pad is very important so as not to injure yourself or your loved one.. The Hospice nurse showed me this procedure and I was able to do this with no discomfort to my husband. And I never injured my back much to my children's amazement. They will also teach you how to change the bed and his diapers. It just became part of his daily care and comfort and I never give it a second thought.
Also early in the 7th stage my husband begin to fall more frequently. There is a way to fall with them to prevent injury to either one of you. A RN taught me this procedure. There are also gait safety belts to help get them up and to hold on to while guiding them to walk. The belt has to be applied correctly so as not to cause injury to the loved one. There is still some danger in hurting your self while helping with the walking and getting up, et.
I don't know if your LO is incontinent as that in itself is a big task. To keep him clean and dry. I found the Sween products very good for keeping the peri area clean and free from Bacteria. They have a no rinse body wash that is good for cleansing of this area between baths. You will need large supplies of the synthetic exam gloves, large wipes and other necessities for his daily comfort. I found the very large wipes for the handicap very good for cleaning the perianal area. If there was any redness in the perianal area I would apply small amounts of the critic-aid cream. Their creams are also very good to prevent bedsores. When I would see a red spot on his body I would apply Sween cream. He never had any bed sores. Turning every 2 hours helps prevent bed sores also and raising and lowering his bed to take the pressure off different areas of the body... (and “turning” from side to side and supporting in the turned position with pillows.)
In the last 3 months of the 7th stage my husband no longer had the function of his bowels and I had to administer every 3 days what are called ..Enemeez..that is between a suppository and a enema. The Enemeez's are used with paraplegics and produce a normal bowel movement without discomfort to the loved one. This loosing ones ability to have a bowel movement will likely occur with all dementia patients at the end stage. This was also a very important part of his care keeping him free of any discomfort he might have with his bowels. (Constipation occurs in the end stages. It is also caused when drugs like morphine are used, so this is a issue that Hospice is very vigilant about.)
When he could no longer swallow Meds had to be crushed and put in ice cream or applesauce. Eventually we went from soft food to nutritional shakes such as ensure which I always added a mashed banana or ice cream as they don't taste very good at all. Toward the end his meds were made in a gel form to rub into the pulse areas. The last days I could only give him spoons of crushed ice every 2 hours and swab his mouth out. That was the most difficult time of all but his lungs stayed clear with no pneumonia so no pain from that.
Eventually the digestive system, pulmonary system and other body functions begin to shut down as their is more deterioration of the brain due to AD. He started having a fever with the change in the disease process and the brains inability to fire as it should and was put on tylenol for comfort measures..The next to last month he had neurological changes in temperature, small seizures and 15 to 20 seconds apnea episodes. All very difficult for both of us.
You will be sleep deprived and that is hard. My body got so use to 4 hours of sleep that it still thinks that's all it needs. Some people might feel depressed, isolated, physically and emotionally drained or just too overwhelmed to carry on. some physical needs are much greater with a different loved one. That is why it is a good idea to do a search of NH in your area and put their name on the long waiting list if the time arrives when one is no longer able to give the care that is needed. I did this but thankful I did not have to place my Jerry. But if I would have I knew he would get good care in these 2 facilities that I choose and that was a sense of peace.
Playing instrumental music brought a peaceful atmosphere, sharing stories of family and their love for him and he was always surrounded with love, smiles and laughter. From his smile and the touch of his hand I felt my Jerry knew us until the end and felt very loved.
Prayer got me through and seeing the love in my Jerry's eyes and his sweet smile as I cared for him. So many nights I laid my head down on my pillow and thought I could not go another day but my strength was renewed each morning.
----------------
Norbert