What does end-stage Alzheimer’s and dementia look like?

Brain disease with memory loss due to Dementia and Alzheimer’s illness

Nine years after my husband Morris was diagnosed with Alzheimer’s disease he developed a kidney stone. At that point he was still walking, but shuffling and sometimes losing his balance. He was speaking, although he often didn’t make any sense. He was laughing–sometimes. And he usually knew his family and friends. It was difficult for him to eat and he often didn’t know what he was eating. But mostly he fed himself.

The day he went to the emergency for severe pain from a kidney stone, Morris was propelled on a downward spiral into end-stage Alzheimer’s. He died six weeks later. In just a matter of days my husband lost his ability to walk, toilet, speak and eat by himself. He needed to be lifted out of bed into a wheel chair and spoon fed. The memory care home he had lived in for two years wouldn’t accept him back because he was no longer ambulatory.

Morris was released from the hospital on a Friday afternoon to a rehabilitation center for physical therapy, which attempted to help he walk–which he never did again. At the rehab center he didn’t sleep at night. The floor attendant kept him in a wheel chair in the hall so he wouldn’t get out of bed and fall. They ended up putting his mattress on the floor because he did fall out and required stitches on his forehead. He’d go days without sleep and my son-in-law predicted that the lack of sleep would get him in the end.

I moved Morris back to his original memory care home on the condition that I had to hire outside help. The rehab facility was understaffed and the food provided little nutrition. The first night I left him there I felt as though I was leaving him to the “wolves.”

When I first placed him in the memory care home two years previous to this time, I was promised that my husband could stay there throughout the course of his illness. So if you are planning to place a loved one in a home, read the contract very carefully.  After he was back at the home for a couple weeks I had to move him again because it was costing way too much at this point to pay the monthly bill of $6,000 dollars plus an additional hourly fee for the outside care agency. Morris lived only two more weeks in an end-stage hospice facility. The staff was top notch and compassionate and I’m grateful that I moved him there.

End-stage Alzheimer’s is not pretty.

It includes:

  • incontinence
  • difficulty eating and swallowing
  • loss of speech
  • inability to walk and get out of bed
  • total assistance with personal care
  • not recognizing family members—but not all the time
  • secondary illnesses
  • sleep issues or sleeping most of the time

What can you do?

  1. Make sure you have all your loved one’s legal and financial papers in place well before this stage. (durable power of attorney, will, trust, advance directives, DNR-do not resuscitate, etc., final arrangements-cremation or burial, memorial service, etc.)
  2. Ask family and friends for support, and be specific. Do you need help with yard maintenance or with walking your dog?
  3. Do you need someone to shovel the driveway or sidewalk if you are spending a lot of time with your loved one?
  4. Ask someone at your place of worship to set up a meal-train or to set up a CaringBridge account to keep friends and family abreast of the current situation.
  5. AFA–Alzheimer’s Foundation of America’s licensed social workers are available Monday through Friday, from 9am to 9 pm EST, and Saturdays from 9am to 1pm EST, via AFA’s National Toll-free helpline–866-232-8484. They are also available by e-mail, chat and Skype.
  6. The Alzheimer’s Association Helpline is open 24/7-800-272-3900.
  7. Hospital chaplains console families and help in times of grief and the difficult period of waiting for a loved one to recover or pass.
  8. Hospice offers support to the patient by providing personal services that include bathing, and palliative care. Hospice also offers grief counseling to families.
  9. It is important that as a caregiver you take care of yourself. On days that I was too exhausted to make dinner, I would heat a pan with a bit of olive oil, saute pre-washed spinach, and pour over a couple of eggs for a healthy, quick meal. Protein is important and so are greens that contain the stress-reducing nutrients vitamin B and magnesium. If you have difficulty eating because of nerves and emotions or time limitations, make yourself a protein shake with berries and/or a banana, a scoop of protein powder and liquid of your choice.
  10. Aromatherapy is a miracle cure for stress and anxiety. Use a wall plug-in to diffuse the aroma of lavender oil to uplift mood, or place a few drops on a handkerchief and tuck it into a shirt pocket or on a pillow. Other oils to try: vetiver, frankincense, myrrh, orange, lemon, bergamot, and grapefruit.

Blessings to you, your family and your loved one.

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

20 energy and stress fixes to use now!

The holidays are stressful for everyone, but especially for caregivers. Here’s a list of some of my favorite stress relievers and energy boosters.

Soak in an Epsom salt bath and put in a few drops of lavender oil.
Soak in an Epsom salt bath and sprinkle in a few drops of lavender oil.
  1. Start the day with an affirmation. Before you get out of bed say something such as: “I am happy for the beautiful day.” I am grateful for my family and friends.” “I am cherished.” Make it yours, make it sincere. It’s amazing how it can set a positive tone of the day.
  2. Breathe! When we are stressed we tend to hold our breath. Take a 5-minute break and sit down in a comfortable chair. Close your eyes and take a deep breath, in and out. Then focus on your breath and watch how your mind quiets down and your muscles relax. Then remember to breathe throughout the day. Whenever you feel yourself getting anxious or tight, take a deep breath and let it go.
  3. Drink water. We’ve heard it a million times but it’s always good to be reminded. Forget about sodas and limit the wine and alcohol. Staying hydrated, especially at this time of year, is vital to supporting the immune system and reducing inflammation. It’s also important to support healthy cognitive function and memory.
  4. Make lists, including a meal plan for the week. It helps eliminate the last hour panic of “what am I going to make for dinner?” and unhealthy last-minute food decisions like ordering pizza.
  5. “Me time” is important! Get respite care if your loved one needs full-time attention. Ask a neighbor, relative or friend to come over for an hour or two so you can take a walk, go to the gym, or meet a friend for lunch or coffee.
  6. Eat walnuts. A daily dose of about 9 whole walnuts or 1 Tbs. walnut oil helps your blood pressure from spiking during stress. Walnuts contain L-arginine, an amino acid that helps relax blood vessels, which in turn helps reduce hypertension.
  7. Drink green tea. L-Theanine is the main chemical constituent in green tea. It is an ideal nutritional aid for stress because it produces alpha-wave activity that leads to deep relaxation and mental alertness. This is especially important because in order to mitigate stressful situations, it’s important to remain calm and alert. Theanine also stimulates the release of the neurotransmitters GABA, serotonin and dopamine, which help us feel happy, motivated and calm. Green tea extract is available as a nutritional supplement, which might be easier and quicker to take, and it’ll save you a lot of trips to the bathroom.
  8. While we’re on the topic of “green,” be sure to eat green leafy vegetables for vitamin B and magnesium, both of which help your body cope with stress.
  9. Two handfuls of cashews (make that a small handful, please; one ounce of cashews contains 157 calories.) provide a mood-boosting effect because they are one of the highest natural sources of tryptophan, the precursor for serotonin, the feel-good neurotransmitter.
  10. Did someone mention dark chocolate? It reduces cortisol, the stress hormone that causes anxiety symptoms. Just a couple of pieces should do the trick.
  11. Stretch! It’s important for everyone, not just runners and athletes. Stretching keeps your muscles flexible, strong and healthy. Without it, muscles tighten and weaken, which puts you at risk for joint pain and strain.
  12. Walk around the block. Just getting out into fresh air will instantly relieve stress, and moving your body gets your blood pumping and will clear your mind.
  13. Light candles and play relaxing music while you eat. It will change the mood instantly.
  14. Aromatherapy is a miracle cure for stress and anxiety. Use a wall plug-in to diffuse the aroma of lavender oil to uplift mood, or place a few drops on a handkerchief and tuck it into a shirt pocket or on a pillow. Other oils to try: vetiver, frankincense, myrrh, orange, lemon, bergamot, and grapefruit.
  15. Sit down, close the door and meditate. If you don’t have a mantra use the word OM. Repeat it silently and when you realize you are not saying it, then gently come back to it. Do it for 10 to 20 minutes every day and yoyu will notice that you are much more relaxed.
  16. Music is the universal language, and it is also the universal stress reliever. Whether it’s jazz, classical, or hard rock that makes you feel better, by all means, play it loud, play it soft, dance to it, drive to it, go to sleep to it. It will definitely help.
  17. Take a multi-vitamin mineral supplement to help with stress, energy and immune support.
  18. Warm up with warming herbs and spices such as ginger, turmeric, cumin, oregano, cayenne, black pepper, cardamon, garlic.
  19. Take an Epsom salt bath and put in a few drops of lavender oil. Light some candles, turn down the lights, put on some music, and relax!
  20. Getting the proper rest is vital to staying healthy and reducing stress. Prepare yourself for a deep night’s sleep by unplugging from electronics at least an hour before bed, taking an Epsom salt bath (put several drops of lavender oil in the water for added relaxation), and making sure the room temperature isn’t too warm.  Good night, sleep tight!

If you, or someone you care about, tend to suffer from stress, anxiety, or depression, these recommendations might just “take the edge off” and improve your quality of life … without the risk of side effects. May the holiday season begin!

Best wishes for a happy, safe and relatively stress-free holiday season!

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.