Archive for February 2015

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The Funniest Book Review Ever!

Wednesday, February 25th, 2015

The following review of my book (Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy) by Craig Thomas is the funniest one I’ve ever received: “Once I started, there was absolutely no way to stop reading this book until its final page. The house is a mess and I don’t care! Brava!”

 

How to Survive as an Alzheimer’s Caregiver

Tuesday, February 17th, 2015

How did I cope as an Alzheimer’s caregiver? How indeed. I had no idea how to survive the following years, but little by little I discovered things that helped tremendously. I want to share with you the events and situations that saved me, hoping they may help you as well.

I Got Help From the Alzheimer’s Association: The Alzheimer’s Association helped me immeasurably. They had an online coaching service and I emailed my coach on a daily basis.

I Kept a Journal: Keeping the journal became a creative outlet in its own right. It later formed the basis for my uplifting, award-winning book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. Alzheimer’s. Caregivers who have read it say it was very helpful to them. Previous caregivers say they wish they’d had it when they were caregivers.

I Learned How to Get Along With Ed Better: A friend had life-saving advice for me: Don’t bring up topics that might upset Ed, If he does get upset, change the subject quickly, and Don’t argue, correct or contradict him. When I finally mastered these tips, our arguments decreased considerably and our relationship returned more or less to its former loving state.

I Took up a Hobby About Which I Became Passionate: One day I wandered aimlessly around Best Buy until I came to the camera section. I ended up buying one. The best thing about my new hobby was that time stood still when I was doing “a shoot.” It took my mind completely off Ed and his condition.

I Made Peace With Alzheimer’s: It’s one thing to admit a loved one has Alzheimer’s. It’s another entirely to accept the diagnosis in your heart. One day I started taking Ed stuffed animals. He loved them. We started playing games with them and giggled like a mother playing with her little toddler. One day I realized a profound change had taken place in my heart. I became aware that I had accepted his condition and I had found a way to relate to him. A way that was satisfying for both of us.

How to Behave When Visiting a Nursing Home

Tuesday, February 10th, 2015

Do’s for Visiting Your Loved One:

  • Respect the resident’s privacy. This includes knocking before you enter the room and stepping out into the hall when personal care is being provided.
  •  Be warm in interacting with your loved one. Smile frequently and use therapeutic touch unless the person specifically does not want to be touched.
  •  Keep the conversation positive and refrain from arguing.

Don’ts for Visiting Your Loved One:

  • Don’t take unruly pets or children to visit. If the children are well behaved, however, they can provide extra pleasure to the patient. Take a pet if the person enjoys it, but check with the facility first to find out if they have a policy about pet visits.
  • Don’t wake up residents who are sleeping.
  • Don’t take food or beverages your loved one isn’t allowed to have. Check with the staff first if you have any questions about what’s permissible.
  • Don’t have large groups of family and/or friends visit at the same time. This may overwhelm residents or make them anxious. How many visitors are too many? This will be different for every resident. Observe your loved one’s mood and try to determine if there are too many people visiting.
  • Don’t stay too long. It may tire your loved one and interfere with the staff’s provision of needed care. How long is too long? That depends. Again, it is different for every resident. Look for cues that your loved one may be getting tired or stressed out.
  • Do not interrupt the resident’s activity time. Find out from the staff when activities are scheduled. It may be acceptable to sit beside them and just observe unless your presence distracts them from the activity.

End-of-Life Healthcare Decisions

Tuesday, February 3rd, 2015

CPR: Doing CPR on an elderly, debilitated patient with a terminal illness may do more harm than good. Risks include broken ribs, collapsed lungs, brain damage, and permanent need for a ventilator. The chance that it would return the patient to his or her former quality of life is practically nil. If you decide you don’t want CPR to be conducted on your loved one, you’ll need to ask the person’s physician to put a DNR order in the chart.

Antibiotics, Hospitalization, Ventilator: It’s probably best to make decisions about these issues at the time of need rather than in advance. The decisions have to take into account the patient’s general condition. Is the patient alert and responsive? Is he or she in pain? What is the person’s quality of life? Is the patient likely to recover from whatever is causing the need for the antibiotic, hospitalization or ventilator? For example if a frail patient has pneumonia, you can try antibiotics and a ventilator if needed, but if the patient continues to get worse, you can then withdraw the medication and ventilator and allow the person to die in peace.

Hospice: In order to receive hospice services you have to agree to forego aggressive treatment for the terminal diagnosis. This means that the patient would not be put on a ventilator, for example. Or if the patient is hospitalized, it would only be for comfort care.

Symptoms that the Patient Qualifies for Hospice Care: It may be time to consider using a hospice service if the patient is showing any of the following: 1) Two or more episodes of pneumonia or other serious infections during the past 6-months, 2) Difficulty eating and swallowing, even with feeding help, that results in weight loss of 10% or more over the preceding 6 months and 3) One or more skin pressure ulcers that are not healing.

The “Real” Issue: All of these decisions are very difficult, but the real issue is to stop focusing on the person’s approaching death and start figuring out how to do everything you can to help the patient have the highest possible quality of life in the time that’s left. This dynamic shift in thinking – from death to life – will benefit both the patient and the caregiver.