Posts Tagged ‘Caregiver’

Attending a Support Group Could Improve Your Quality of Life

Tuesday, October 7th, 2014

What Is a Support Group? A support group is a regular meeting of people with the same illness or life situation (such as being a caregiver).

Support Group Formats: Some groups are structured and educational, bringing in speakers; in others the primary purpose is for members to share their feelings and experiences as well as give encouragement and practical advice to each other. Some groups meet in person, others meet online, and still others meet via phone.

Who Leads the Group? In some cases groups name their own leaders; other times a trained professional facilitates the meeting. Some Alzheimer’s caregiver groups provide free care for the person being cared for so that caregivers can be free to attend the meetings.

Meeting ‘Rules:’ The first is usually that any information shared is confidential. Secondly, only one person is allowed to talk at a time. Finally, members are instructed not to be judgmental. An additional rule for caregiver support groups is that the focus is on the caregiver – not the person being cared for.

General Benefits of Support Groups: It can be helpful just to talk with other people who are in the same situation you are in. Although some people may not feel like speaking up, according to an article on the Area Agency on Aging website, it can be helpful just to listen in.

Specific Benefits: According to a Mayo Clinic website article, some benefits of participating in support groups include:

–       Feeling less lonely, isolated or judged

–       Gaining a sense of empowerment and control

–       Improving your coping skills and sense of adjustment

–       Talking openly and honestly about your feelings

–       Reducing distress, depression or anxiety

–       Developing a clearer understanding of what to expect with your situation

–       Getting practical advice or information about treatment options

–       Comparing notes about resources, such as doctors and alternative options

How to Find a Support Group: To find a support group ask your doctor, check with your friends or acquaintances who are caregivers, or call your local Area Agency on Aging or your chapter of the Alzheimer’s Association. You can also go to the Alzheimer’s Association website (alz.org) and search for a group near you or sign up for one of the online support groups the Association operates.

Is anyone attending a support group? If so, is it helpful to you?

One Man’s Descent Into Alzheimer’s – Does Any of This Sound Familiar?

Tuesday, September 30th, 2014

The Beginning of Ed’s Long Journey Downward

 Ed was my beloved Romanian life partner of 30 years. Today my mind flashed back to the first months of 2000, when his dementia began to become more prominent.

For example, I did all of his grocery shopping. When I suggested some items to buy for him at Krogers, he didn’t recognize several of his very favorite foods. He didn’t even remember Starbucks, which was the only coffee he had used for years.

I mentioned to him that he should put the coffee in the freezer (as he always did) and he asked me where the freezer was. When I told him it was in the kitchen, he didn’t remember what a kitchen was.

I said, “You know, where your stove is.”

“My stove? What is a stove? Do I have a stove?”

I continued, “Yes, where you cook your food.” That didn’t help.

He called me back a little later. He said that he had found his kitchen, but that there were only clothes and shoes in it.

The Continuation of Ed’s Decline

 Beginning in June of 2005, I kept detailed records of Ed’s continuing decline:

June 1: Ed has always taken great pride in his appearance but came to the door to receive expected guests when he did not have his dentures in. The most amazing thing was that he didn’t even seem to care.

June 3:Couldn’t remember how to operate the TV.

June 10:Called me to confirm his phone number, which has been the same for 40 years.

June 12: Couldn’t remember where he keeps his clothes.

June 15:Was terribly distressed because he couldn’t find his pants, which were on the bed right beside him.

And it only got worse as time went by.

 

How to Visit a Friend With Alzheimer’s

Tuesday, September 23rd, 2014

Family members or other very close loved ones who are accustomed to visiting may have a set routine and may have learned some or all of the tips below. But if you’re a friend visiting for the first time, or if you don’t visit the person very often, you may feel awkward and not know what to do.

I have compiled these tips based on four sources, including an article of mine published on the Huffington Post, an article published by Carole Larkin on the Alzheimer’s Reading Room, and personal communications from Teepa Snow (05.30.13) and Tom and Karen Brenner (10.03.13)

When I reviewed the sources I discovered that several tips were found in two or more of them.

  1. Start off by looking friendly, making eye contact, offering a handshake and introducing yourself (Snow, Larkin)
  1. Be at their level physically – bend down if necessary – for example, if they are in a wheelchair. (Larkin)
  1. Talk about the old times more than recent information (Snow)
  1. Don’t ask if they remember something (Marley; Larkin)
  1. Speak calmly, slowly and in short sentences (Larkin, Snow)
  1. Ask only one question at the time and pause between thoughts or ideas to give them a chance to answer. (Larkin, Snow)
  1. Don’t correct them or argue with them (Marley, Larkin, Snow)
  1. Keep memories positive. Don’t bring up topics that could upset them. Turn negatives into positives (Marley, Snow, Larkin)
  1. Do something with the person rather than just talking to them. Bring pictures, CDs of music the person used to enjoy, or other “props” (such as items related to one of the person’s special interests), to bring up old memories. (Snow, Brenners)
  1. Tell them what you are going to do before you do it – especially if you are going to touch them. (Larkin)

Following these tips should make you feel more at ease and make your visit more enjoyable.

Does anyone have any additional tips for visiting a friend with Alzheimer’s?

 

The Joys of Visiting People With Alzheimer’s

Tuesday, September 16th, 2014

After retiring last Spring I’d decided to volunteer to visit a few people at a local memory care facility. I got the idea from my dogs’ veterinarian, Ann McHugh, DVM, who volunteers to visit people in a hospice care facility.

Ann told me it was rewarding, and I’d heard the same thing from other friends and acquaintances. I never believed them. I could understand how the residents could benefit from my visits but not that I would benefit even more.

So it was a surprise to learn it’s true. No matter what mood I’m in when I arrive I always feel better when I leave. I truly do receive so much more than I give.

Carolyn, my first lady to see, was sitting in the lobby with three other residents. I went up to her, introduced myself, and told her I was there to visit her.

“Me?” she asked, smiling and sounding pleasantly surprised.

“Yes, you,” I answered promptly.

She was delighted to have a visitor even if she had no earthly idea who I was or why I was there to see her. We went to her room, where I gave her a small gift.

She said, “I’m sorry I don’t have anything to give you.”

To help her save face I pointed out that she had some cookies on her table.

“Sure,” she said, laughing. “Take as many as you want.”

Despite her shaky memory, Carolyn’s social skills were so good you would have thought she was volunteering to visit me! And those cookies were some of the best I ever had.

Another one of my favorite ladies is Ruth. She once told me, “You’re the only person around here I can have an intelligent conversation with.”

She and I always have great visits filled with laughter. Ruth has an outstanding sense of humor that Alzheimer’s hasn’t robbed her of. I hope it never will. When it’s time for me to leave we’re both sorry.

Every week I look forward to Thursday’s visits, wondering what my ladies are going to say or do next.

 

 

Man With Alzheimer’s Shows That Chivalry Isn’t Dead

Tuesday, September 9th, 2014

Ed, my beloved life partner of 30 years, had been charming and chivalrous for as long as I had known him. One might have expected these qualities to disappear once he developed Alzheimer’s, but the opposite occurred. He became even more charismatic than before.

I was deeply touched one day when out of the blue he announced, “Since I became in such high admiration of you, other beauties didn’t exist.”

I was amazed that this man living with dementia could still express love so poetically.

But although I was his main “lady,” he flirted with others. Whenever any staff woman was preparing to leave his room he would kiss her hand and tell her how beautiful she was. You can imagine how happy they were if they had to go to his room for something or other! Many of them thanked me repeatedly for bringing him there.

And he kissed the hands of his lady visitors. Furthermore, he did the same when he was out and about in the Center. He consistently kissed the cook’s hand until one day she asked, “Where were you when I was looking for a husband?”

I discovered the clearest sign of his chivalry, however, one evening when I was checking out at the front desk. Betty, the receptionist on duty, said, “I’ll bet that Edward was a real lady’s man in his day. Every time he comes up here he tells me `how beautiful I am. And that he really means it from his heart. That it’s not just words from his lips.”

One day when I went to visit, the cleaning lady was there silently mopping his floor. When he saw me he turned to her and said, “Isn’t she beautiful?”

The next day he passed away.

Yes. Ed was a true gentleman and lady’s man to the very end.

 

 

The Profound Innate Joy in Human Life – Alzheimer’s or Not

Tuesday, September 2nd, 2014

After a pleasant drive to the Alois Center on a crisp fall day, I arrived and walked down the hall to Ed’s room, wondering what type of mood he was in that day.

When he first saw me his eyes lit up and he said “Oh, it’s you! Oh, I am so happy to see you! You are an angel! I am overwhelmed to see you! Oh, I am overwhelmed!”

He took my hand and kissed it several times, continuing to say he was overwhelmed and didn’t have words to say how happy he was to see me.  His eyes were shining, his face was full of joy, and he held my hand, kissing it again from time to time. That was so typical of Ed – ever the quintessential European gentleman.

He was so happy that he was near tears. Now I don’t have words to describe how his joy and his being near tears both at the same time combined to make a unique emotional experience for me. He was so happy that he almost cried.   While we were sitting on the sofa I picked up The Little Yellow One, one of his beloved stuffed animals, and handed it to him. He reacted joyfully and as though he had never seen it before.

“Oh, the little one. I love him so much!” (He referred to all of his stuffed animals as ‘him.’)

His eyes lit up again and he petted the little animal with loving strokes and then kissed it several times on the top of the head with an affectionate expression on his face.   His extreme joy to see me and his intense love for the little stuffed animal affected me to my core and I realized that some people with Alzheimer’s have the innate capacity to experience joy that can’t be put into words by a normal writer like me.

I was so happy to see Ed in that wonderful state of being, and I felt warm inside all the way home.   If only we all could feel such joy from a simple visit from a friend.

Does anyone else have stories to share about joy with your loved one?

 

 

 

 

 

 

An Excellent Resource for You – The Alzheimer’s Association Website

Monday, August 25th, 2014

The Alzheimer’s Association website is an excellent resource for caregivers. To access the caregiver resources, click on “Life with Alzheimer’s” at the top of the page and then click on “Caregiver Center.” There you’ll find several major links. To get an idea of the breadth and depth of information provided, click on each one of these and take a look at the sub-links and their sub-links.

For example, “Daily Care” has sections on Behaviors, Communication, Activities, Respite Care, Memory Loss, Personal Care and Medical Care. Click on these titles to see what is included in each. Under Personal Care you’ll find information and advice about issues such as Incontinence, Bathing, Dressing, Grooming, and Dental Care, just to name a few.

Under “Get Support” you’ll find sub-sections on Finding Your Local Chapter, Message Boards, Support Groups, Your Health, and Care Training. There are Message Boards for Caregivers, Spouses’ or Partners’ Caregivers and Younger-Onset Alzheimer’s Disease or other dementias. The section on Support Groups includes information on how to find one locally. There are also online Support Groups operated by the Association.

If you click on “Planning for the Future” you’ll see topics such as Legal Matters, Care Options, Pay for Care, Safety, Dementia and Driving, as well as detailed explanations of Medicare, Medicare Part D, Medicaid, Insurance, and other related issues.

The section for “Kids and Teens” is especially helpful for families having young people affected by the Alzheimer’s disease of a grandparent or other close elderly person. It includes introductory information, videos, an explanation of how Alzheimer’s affects the brain, and stories for different age groups.

There is also an impressive list of 101 activities kids and teens can do with a person who has Alzheimer’s. In addition, there are resources for parents, including advice on how to talk to children and teens about Alzheimer’s disease. Finally there is a link to purchase Maria Shriver’s book, “What’s Happening to Grandpa?”

The Community Resource Finder section can help you find local resources, including your local Alzheimer’s Association chapter, various types of facilities, geriatric care managers, day care programs, elder law attorneys, home care professionals, support groups, hospices and transportation.

The Other Side of the Coin: When Lack of Inhibition Is a Wondrous Thing

Monday, August 18th, 2014

Lack of inhibition is a trait of many people living with Alzheimer’s. It can lead to unwanted behaviors, as I discussed in my previous article on the topic. However, as with many things to do with Alzheimer’s, there is the other side of the coin. In my personal experience, lack of inhibition can be just as positive and beautiful as it can be negative.

Here are some wonderful examples of lack of inhibition from Ed.

Although before developing dementia Ed was rather reserved when it came to expressing physical affection, when he had dementia, he changed. For example he usually held the hands of his visitors – even the men – often all the way through their visit.

He also displayed physical affection to other residents – also including the men. One day a few weeks after Ed moved to the Center, I arrived to find him sitting on the sofa beside a resident named John. I was surprised to notice they were holding hands.

When I entered the room they smiled broadly and took turns telling me they were best friends and they moreover, they had been best friends for years. It was very touching.

Another example occurred one day when I was visiting and all of a sudden Angel, who I thought was the most beautiful aide in the entire place, came in just to ask him if he needed anything.

He said he didn’t but patted the empty space next to him on the sofa, inviting her to sit down. She did and the three of us engaged in pleasant conversation. After a while, Ed reached up and began to gently stroke her golden hair. She smiled and put her arm around his shoulder. It was a lovely and natural gesture that warmed my heart.

Does anyone else have any positive stories about their loved one’s lack of inhibition?

 

When Lack of Inhibition Leads to Negative Behaviors

Monday, August 11th, 2014

According to an article published on Caring.com, “as dementia slowly robs self-awareness, the person becomes less inhibited, losing both the memory of how he or she once behaved as well as a sense of social norms. It’s as if an internal filter on what’s polite behavior or not is turned off.”

What Happens: Loss of inhibition is not uncommon in people living with dementia. Some of the classic resulting behaviors, listed on an article entitled, “Symptom Guide,” published on the Dementia Guide website, are: Makes comments that are mean or hurtful, Curses and uses foul language, Makes sexually suggestive comments or advances, Lacks modesty (e.g., changes in front of people, urinates in public), Tells jokes that are offensive.

What to Do About It: The Caring.com article lists several suggestions as to what you can do about negative behaviors resulting from a reduction in inhibition. These include, among others:

  • Know that some behaviors aren’t what they look like. People with dementia who are losing language skills often express themselves with actions. For example, someone who unzips his pants may need to use the restroom. A person who disrobes may be hot. Someone who hurls a stream of foul language may feel stressed.
  • Notice what else is going on when a behavior occurs; something about the environment may be triggering a reaction in the form of this inappropriate behavior. Pay attention to the noise level, who’s present, the time of day, whether the person has eaten or used the bathroom. Jot down this information if an odd behavior happens more than once.
  • Ignore these behaviors where possible. Reacting to them — especially with outrage or disapproval — may only egg on or upset the person.
  • React with calm reassurance. The person may be acting out because he or she feels uncomfortable, insecure, or overwhelmed by noise (such as in a public place).

People With Alzheimer’s May Yearn to Be Touched

Monday, August 4th, 2014

Research has consistently shown that touch can be beneficial to people living with Alzheimer’s. For example, scientists at UCLA studied the physiologic effect of touch. They concluded that touch can dampen symptoms of the disease. Specifically, they found that it decreases stress, increases the relaxation response and decreases anxiety.

An article by D. L. Wood and M. Diamond, published in the journal, Biological Research Nursing, discusses a study in which subjects with Alzheimer’s received treatment with therapeutic touch for five to seven minutes twice a day for three days. There was a significant decrease in overall agitated behavior and in two specific behaviors – vocalization and pacing or walking – during treatment and 11 days of a post-treatment period.

Another article, by Rand L. Griffin and Evelyn Vitro, published in the American Journal of Alzheimer’s Disease and Other Dementias, presented results of an observational study conducted at the Alzheimer’s Resource Center of Connecticut.

The study found that “following treatments of therapeutic touch, patients demonstrated visible signs of well-being and relaxation – often leading to sleep. Staff also found therapeutic touch a way to positively forge emotional connections with patients who are verbally uncommunicative and who suffer from varying degrees of dementia.”

So if you aren’t regularly expressing affection by touching your loved one with Alzheimer’s, try it the next time you are with him or her. You may be pleasantly surprised at the response you get.