Posts Tagged ‘Caregiver’

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.


Breaking the News When It’s Alzheimer’s

Tuesday, January 27th, 2015

 Why Informing Others Is Important: When a person is diagnosed with Alzheimer’s it is usually very difficult to decide whether or not to make the diagnosis public, but there are many advantages to doing so. One is that it will help others be more understanding and compassionate with the diagnosed person. In addition, revealing the diagnosis gives friends and family members an opportunity to participate in planning for the future. Perhaps one of the most important reasons to go public is that it enables the patient and the caregiver to receive understanding and emotional support.

How to Let People Know: First, decide who will announce the news – the person who was just diagnosed, a family member, or close friend. The announcement may be made at a family meeting or you may want to inform people individually. Sometimes sending out a letter can be helpful because it gives people time to digest the news before talking with you about it. This avoids putting them on the spot.

Special Issues to Consider When Informing a Teenager or Child: Be especially thoughtful when informing young people about the illness. It’s important to be honest with them about the situation. With younger children you need to use simple language they can understand. Tell them the basic facts but don’t give more information than you feel they can handle.

If You Decide to Keep It Confidential: You have the right, of course, to keep the diagnosis confidential, but realize this can sometimes lead to stress for everyone involved. It prevents both the patient and the caregiver from getting much-needed support from friends and family members.

3 Things Alzheimer’s Caregivers Should Never Do

Tuesday, January 20th, 2015

Don’t Be in Denial

When a loved one shows signs of dementia it’s painful to acknowledge it. It’s common for their friends and loved ones to be in denial. It’s easy to ignore the symptoms, make excuses for the person, or push the symptoms to the back of your mind.

The problem with denial is it doesn’t lead you to take your loved one to a primary care physician or neurologist for a complete workup. And the problem with that is that sometimes dementia is caused by health issues other than Alzheimer’s. Some of those problems can be treated or even reversed.

Don’t Ask “Do You Remember?”

Asking a person with Alzheimer’s if they remember something is a common mistake that’s easy to make. It’s almost as though we think we can jog their memory. But we rarely do. They have probably forgotten the event in question. That’s what people with Alzheimer’s do. They forget. So it’s better to say, “I remember when . . . ” and then tell them a story.

Don’t Argue With or Contradict the Person         

You can never win an argument with people who have dementia. They will stick to their guns to the bitter end! It’s much better to agree with them and then change the subject. This can prevent a nasty argument that would spoil your time with your loved one.

10 More Tips for Visiting People With Alzheimer’s

Tuesday, January 13th, 2015

Here are 10 more tips for visiting people with Alzheimer’s:

  1. Make eye contact
  2. Only ask one question at a time
  3. Talk about the old days more than recent information
  4. Do not correct or argue with the person
  5. Use their name frequently while talking
  6. Don’t visit if you find they already have a visitor; wait until that person leaves
  7. Don’t even bring up topics that might upset them
  8. Arrange for a musician to provide live music
  9. Watch old movies with them
  10. Ask open-ended questions


10 Tips for Visiting a Person With Alzheimer’s

Friday, January 9th, 2015

Introduction: Many people simply don’t know how to interact with or entertain people who have Alzheimer’s. The following tips will help you improve the quality of your visits. With a little thought and visiting experience you may come up with more tips yourself. In my next post I’ll publish 10 more tips.

  1. Speak Slowly and in Short Sentences
  2. Don’t Ask Them if They Remember Something
  3. Keep Visiting Even Though They May Not Remember Who You Are
  4. If the Person Starts Getting Agitated, Stop What You’re Doing and Change the Activity or Subject
  5. Take a Pet or Child to Visit Them
  6. Take Art Supplies and Have Them Draw or Paint
  7. Play a CD of Music for the Person
  8. Take Them a Small Wrapped Gift
  9. Play Simple Games With Them
  10. Look at Old Photographs Together

Writing Poetry With a Person Who Has Alzheimer’s

Friday, January 2nd, 2015

I volunteer to visit some ladies with Alzheimer’s at a local memory care facility. One of “My Ladies” is Ruth. One day when I was visiting Ruth I got the idea of writing some poems together. I decided we’d write happy poems. I decided to simply start off by saying what I thought would be a first good line for an amusing poem, then raise my right arm toward her and look at her expectantly as though to say, “You say the next line.”

This worked extremely well. We typically alternated lines – I’d say a line, then she followed with the next. What surprised me was that in most cases she immediately spouted off a line that not only logically followed mine, but also rhymed with it.

Our first one was about the birds and the bees. Here it is:

The Birds and Bees

The birds and the bees

Crawl on their knees and

Do as they please.

They don’t have flees –

Those birds and bees.

Seeing how happy Ruth was to actively participate in writing the poems I decided we’d keep doing it.

People With Alzheimer’s Can Be Stumped by the Simplest Things

Friday, December 26th, 2014

Ed and Marie - 2007People with Alzheimer’s may have great difficulty figuring out the simplest activities. The following story illustrates that poignantly.

One day at the end of my visit to Ed, he accompanied me to the front door. When we reached the door we went through our usual leave-taking, saying good-bye repeatedly and blowing kisses to each other.

“What should I do now?” he asked plaintively.

“Do whatever you want,” I answered as I waited for the door’s 30-second delay to pass.

“I don’t know what to want,” he said.

I was blindsided by his remark. He seemed so lost.

“Well, why don’t you just sit in this nice chair here for a while?”

He sat down obediently.

“How long should I sit here, Marie?”

“Sit however long you want,” I said, turning from the door and walking back toward him.

“Marie, I don’t know how long,” he said, looking forlorn.

“Okay,” I said. “You sit here thirty minutes.”

“Thank you, Marie. I will sit here for thirty minutes. What should I do then?”

He looked at me as though I had the answer to all of life’s critical questions, including that one. My heart sank as I realized he now needed specific instructions for what to do every moment.

“Sit here in this chair for a half hour,” I said, kneeling in front of him. “Then go to your room. When you get there, get ready for bed. I will visit you again tomorrow.”

 As though he could remember all these instructions.

 “Oh, Marie,” he said, “Thank you for your guidance. It really means so much to me.”

And with that we blew each other kisses again and I left. I was completely overwhelmed by his further descent into dementia. This formerly brilliant lawyer and professor could no longer even decide how long to sit on a chair.