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.

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