LIVING WITH DEMENTIA
We've reached the next stage of my journey with mum.
But let me tell you the story first.
Mum caught a cold around 12 January and on the 15th afternoon choked on her phlegm. We decided to bring her to the A&E (Accident and Emergency) Unit at our local hospital. Mum was warded and to cut a long story short, she spent 2 weeks in and out of the hospital before we reached the bottom line. Mum could no longer swallow and needed to be tube fed.
The challenge was to keep the tube in. We went home without the tube on 18 January as mum had pulled it out....she did not seem happy with the tube nor with the hospital folks around her. In fact she had loudly scolded a male nurse "Bodoh Botak" (bodoh=silly cos he poked her 5 times trying to fix a plug for IV antibiotics and botak=bald cos he had a short crew cut). Way to go mum!.
I am not sure why the hospital sent us home because mum couldn't really eat or drink. They said there wasn't much that they were doing. And at home, we couldn't do much either.
 |
| NGTube Fashion Trend Setter! |
Within 2 days mum became severely dehydrated and was warded again. This time, somehow we sensed a difference. She seemed to have calmed down and being somewhat lethargic and sleepy, the Ward Doctor said we should try the NG(nasal gastric) tube again. It went well, the tube stayed in and mum seemed to have accepted its presence. Perhaps the Doctor and Nurses were gentle and tried their level best to help mum keep the tube in. It worked. Thank you Dr Chew and nurses of Ward 5A.
We went home for the Lunar New Year with mum fully accepting NG tube feeding as part of her daily routine.
Alas, 2 weeks later we were back at the hospital, this time Mum had Cellulitis for the second time within a month. However all went well and we came home after a week's stay.
Why the story telling? Because there is the
* need to be aware of the challenges of hospitalisation and having to deal with the unpredictablity of illness in elderly folks
* reality that mum depends on us for her every need. Mum hardly speaks except to express pain or when she's hot or cold or the rare occasions when she's a little assertive and tells me off for touching her with cold hands or why i was in a spaghetti strap night dress in the air con room. She also appears aware of what's going on around her and is able to respond when our domestic helpers tell her "grandma, makan" (grandma, we eat!)
* acceptance that the frequency of infections is likely to increase as the body begins to lose its ability to fight infections and heal itself
* need to understand and accept that there is a time for everything and that things have a way of working themselves out in the end and the
* need to be kind to one self and to see the funny side of dementia
SO
tube feeding is now the new skill to learn at home. Not everyone is able to aspirate yet i.e using a syringe to siphon out a little of the stomach contents and testing this against the PH indicator paper prior to feeding mum, but we'll get there. We've been taught to feed only if the colour falls below a certain level on the PH indicator chart as we need to be sure the NG tube is in the stomach and not the lungs.
We're very grateful that mum's dementia, diagnosed in 2005, seems to have stabilised. In fact we all agree that mum appears to be more interactive and alert. I'd like to believe that it has been our approach to caregiving with its focus on nutrition and loads of dedicated loving care (on googling info, we find that we have been doing many things right) that has helped mum be where she is today.
We are especially thankful that mum is quiet and serene and when she does get disoriented or hallucinates, which appear to be less these days, we already know the signs before hand. At 90, mum has the flawless skin of a baby and the beauty of a lady at peace.
And the day is never without some excitement. We are kept busy watching mum to make sure she doesn't pull the NG tube out. She wears special mittens which minimise finger movements. However, we do release her fingers at various times during the day and when we look away for even 5 seconds, mum's fingers reach for the tube. We've had a few tussle of the fingers with mum glaring at us as we prise her fingers from the tube. Mum is surprisingly still very strong. So, vigilant we must be, because it ain't no day at the beach for mum when the NG tube has to be re-inserted.
Listen to the quietest whispers of your mind. They are telling you the choices that will help you the most: Dr Shad Helmstetter in his book Choices.
Happy 90th Birthday
dearest mum /grandma
 |
| Mum with Kate and her hello kitty cushion gift |
On 22 March, mum turned 90. We're not sure if she's aware of the
milestone but we had, on mum's behalf, a simple yummy western meal---lamb a
special request from my sister, Kate, who had turned 60, 2 days prior. My
niece, Jacqueline decorated the living/dining area.
 |
| ice cream cake:vanilla/coffee |
 |
| a 2nd cake--sugee |
 |
| melt in the mouth boneless lamb shoulder |
MENU
Slow Roasted Lamb with garlic, rosemary and a marmalade glaze
Roast Chicken seasoned with rosemary and cumin and stuffed with Lemon
Spaghetti with Chili and Garlic Bread Topping
Brocolini simply microwaved
Mashed Potato
Pan Roasted Sweet Potato and Pumpkin
Mint/Marmalade Gravy
Ice Cream Birthday Cake
 |
| Sweet Potato and Pumpkin |
 |
| Brocolini |
 |
| Mashed Potato |
 | |
| Spaghetti |
photos by jacqueline
Alzheimer's Information
There's very good information on www.alz.org on the 7 stages of Alzheimer's. I'm highlighting the 7th stage because mum has reached what the doctors term "end stage alzheimer's". Apart from the swallowing difficulty, mum has lost a lot of weight (now weighs only 38kg--hopefully this will go up when we see the Dietition on 16th April), has not smiled in a long while (although her eyes do crinkle when we joke with her) and seldom speaks.
STAGE 7: Very Severe Cognitive Decline
In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and eventually, to control movement. They may still say words or phrases.
At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired.
STAGE 7: Very Severe Cognitive Decline
In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and eventually, to control movement. They may still say words or phrases.
At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired.
As the disease advances, the needs of the person
living with Alzheimer's will change and deepen. A person with late-stage
Alzheimer's usually:
- Has difficulty eating and swallowing
- Needs assistance walking and eventually is unable to walk
- Needs full-time help with personal care
- Is vulnerable to infections, especially pneumonia
- Loses the ability to communicate with words
Caregiver’s Role
During the late stages, your role as a caregiver
focuses on preserving quality of life and dignity. Although a person in the
late stage of Alzheimer's typically loses the ability to talk and express
needs, research tells us that some core of the person's self may remain. This
means you may be able to continue to connect throughout the late stage of the
disease.
At this point in the disease, the world is primarily experienced through the senses. You can express your caring through touch, sound, sight, taste and smell. For example, try:
- Playing his or her favorite music
- Reading portions of books that have meaning for the person
- Looking at old photos together
- Preparing a favorite food
- Rubbing lotion with a favorite scent into the skin
- Brushing the person's hair
- Sitting outside together on a nice day
Understanding late-stage care
www.helpguide.org
In the final stages of life-limiting illness, it can become evident that in spite of the best care, attention, and treatment, your loved one is approaching the end of his or her life. The patient's care continues, although the focus shifts to making the patient as comfortable as possible. Depending on the nature of the illness and the patient’s circumstances, this final stage period may last from a matter of weeks or months to several years. During this time, palliative care measures can provide the patient with medication and treatments to control pain and other symptoms, such as constipation, nausea, or shortness of breath.
Even with years of experience, caregivers often find the last stages of life uniquely challenging. Simple acts of daily care are often combined with complex end-of-life decisions and painful feelings of bereavement. End-of-life caregiving requires support, available from a variety of sources such as home health agents, nursing home personnel, hospice providers, and palliative care physicians.
Identifying the need for end-of-life care
There isn’t a single specific point in an illness when end-of-life care begins; it very much depends on the individual. In the case of Alzheimer’s disease, the patient’s doctor likely provided you with information on stages in the diagnosis. These stages can provide general guidelines for understanding the progression of Alzheimer’s symptoms and planning appropriate care. For other life-limiting illnesses, the following are signs that you may want to talk to your loved one about palliative, rather than curative care options:- The patient has made multiple trips to the emergency room, their condition has been stabilized, but the illness continues to progress significantly, affecting their quality of life
- They’ve been admitted to the hospital several times within the last year with the same or worsening symptoms
- They wish to remain at home, rather than spend time in the hospital
- They have decided to stop receiving treatments for their disease
Patient and caregiver needs in late-stage care
- Practical care and assistance. Perhaps your loved one can no longer talk, sit, walk, eat, or make sense of the world. Routine activities, including bathing, feeding, toileting, dressing, and turning may require total support and increased physical strength on the part of the caregiver. These tasks can be supported by personal care assistants, a hospice team, or physician-ordered nursing services.
- Comfort and dignity. Even if the patient’s cognitive and memory functions are depleted, their capacity to feel frightened or at peace, loved or lonely, and sad or secure remains. Regardless of location—home, hospital, hospice facility—the most helpful interventions are those which ease discomfort and provide meaningful connections to family and loved ones.
- Respite Care. Respite care can give you and your family a break from the intensity of end-of-life caregiving. It may be simply a case of having a hospice volunteer sit with the patient for a few hours so you can meet friends for coffee or watch a movie, or it could involve the patient having a brief inpatient stay in a hospice facility.
- Grief support. Anticipating your loved one’s death can produce reactions from relief to sadness to feeling numb. Consulting bereavement specialists or spiritual advisors before your loved one’s death can help you and your family prepare for the coming loss.
No comments:
Post a Comment