Posts Tagged ‘Caregiver’

Why I Volunteer to Visit People With Alzheimer’s

Wednesday, March 18th, 2015

I had just returned home from my weekly visiting and was sitting lost in thought. Lost in the memory of my just-completed visit to Ruth (not her real name).

She was quite confused that day. She told me that she had tried to rent an apartment that she liked very much, but before she could conclude the deal they fixed it up for someone else. I knew that wasn’t true but I empathized with her. “Oh, I’m so sorry,” I said.

Then I changed the subject to something pleasant. “I see you have some Sees candy here. Do you want a piece?”

“Oh, yes,” she said. “Will you have a piece with me?”

“Of course,” I answered. “Gimme that box!”

When I finally told her it was time for me to leave, she got a pouty look on her face and asked, “Oh, do you have to go?”

“Yes, I’m afraid I have to leave now. I wish I didn’t, but I’ll come back and see you next week.”

Then she walked with me to the door. She put her arms around me and hugged me very tightly.

“Oh, I sure am glad you stopped by. I depend on you. You’re my friend,” she said.

“I love coming to see you,” I said.

“See you next week,” I told her as I went out the door.

“See you,” she said, smiling and very gently closing her door.

This is why I volunteer. I felt warm all the way home. And I’m looking forward to next week when I can “find” the candy and enjoy some. But mostly so I can see Ruth again and experience the warmth and love we have in our very special relationship.

 

 

Don’t Ask Who, What, When, Where, Why or How

Wednesday, March 11th, 2015

When talking with a person who has Alzheimer’s it’s best to avoid questions whose answers are too specific (who, what, where, or when) and also avoid ones whose answers are too complicated (why or how).

For example if you ask, “Did your daughter visit you this week?” your loved one may not remember. They may not even remember they have a daughter.

The same goes for questions such as “What did you do this morning?” Again, they probably won’t have the faintest idea what they did and they may just feel embarrassed or stupid.

It’s best to let the person save face and ask, “Are you enjoying your day?” or “How are you feeling today?”

Instead of asking, “Where did you go on the drive they took you on today?” you might ask, “Did you enjoy the drive?” (This assumes they just got back from the drive and will remember they went on one.)

Why and how questions tend to be too complicated for a person with Alzheimer’s. For example, they may have difficulty answering, “Why are you in such a bad mood today?” Again, you might say, “It seems you aren’t feeling well today.”

How questions also tend to have complicated answers. An example would be “How did you find your purse?” (which she had lost). She probably won’t remember she lost her purse let alone that she later found it.

We may also forget and ask,” Where did you find your purse?” And again she may feel bad that she can’t remember.

It’s better to say, “I see you found your purse. You must be happy about that.”

This is simple advice but it’s often hard to remember. So there we go again asking questions they most likely won’t be able to answer. “Where did they have the church service this morning?” or “Why did you skip the church service?”

We have to keep reminding ourselves not to expect them to remember recent details and not to be able to answer questions whose answers are complex.

 

 

10 Tips for Nonverbal Communication

Wednesday, March 4th, 2015
  1. Don’t Talk From Behind Them: Despite your best efforts you may sometimes forget this one, as described above.
  1. Make Eye Contact: This tip is related to the one above. If you’re standing behind the person you can’t make eye contact.
  1. Be at Their Level: If both you and they are standing that’s fine. But if they’re sitting on a chair it’s best if you kneel in front. This is especially important if they are in a wheelchair. Otherwise they will have to look up at you and they may feel you’re towering over them.
  1. Use Therapeutic Touch: People with Alzheimer’s may yearn to be touched, but you should ask for permission first and tell the person what you are going to do. Otherwise they may become alarmed.
  1. Don’t Make Sudden Movements: This, too, may scare the person.
  1. Offer to Shake Hands Every Time You Visit: They probably won’t remember you did it the last time. Put your hand out; they may reach for yours. If not let it go. This tip is related to therapeutic touch.
  1. Use Laughter. Alzheimer’s is a deadly serious disease. Nonetheless, sometimes laughter is the best medicine. Be sure to have some light-hearted stories to tell the person at each visit. I have found they may counter by telling you a funny story. Just be sure you’re laughing with the person, not at them.
  1. Use Visual Cues: Point, touch or hand them the item you want them to use. For example, if you want them to drink some water, point to it or put a full glass near them and/or then pick it up and hand it to them.
  1. Palms up: Never sit with your arms crossed. This tends to convey anger just as it does when interacting with a person who does not have dementia. If you have your palms up it will probably be interpreted by the person as “I’m receptive to you” or “Take my hand” or “I like you.”
  1. Smile a Lot: This is probably the most important guideline of all. You will want to do this at any time (except if the conversation is more serious), but particularly when you’re telling the person something pleasant or humorous and when the person is telling you something of a like nature.

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