Posts Tagged ‘Caregiver’

Sometimes We Suffer More Than the Person With Alzheimer’s

Friday, November 21st, 2014

Once Ed was moved to a new room at his nursing home. I went out to visit him to see how he was adjusting.

 “I want to go home,” Ed kept repeating plaintively to me and everyone who passed by.

I felt faint and terribly guilty. I felt as though I’d ripped him away from everything that had become familiar to him. From what he’d come to accept as his ‘home.’

The instant I woke up the next morning I heard Ed’s melancholy voice in my head, repeating over and over, “I want to go home.”

Then I went out to visit Ed again.

“How’s he doing today?” I asked the aide, expecting the worst.

“Oh, he’s fine,” she said with a little laugh. “He stopped asking to go home.”

“He what?” I asked, stupefied.

“Yeah. He’s already forgotten he was moved and he’s settled into his new room as though nothing’s changed.

I stopped in my tracks and let her statements sink in.

“I guess that may be one of the benefits of dementia. You quickly forget painful things that happen to you,” I said, mostly to myself.

This just goes to show that sometimes we suffer more than the person with Alzheimer’s.

 

 

Life After Alzheimer’s

Friday, November 14th, 2014

Here’s my story of life after Alzheimer’s.

Two weeks after Ed died, I was offered the dream job I’d interviewed for in Kansas City. My new life was tremendously challenging and took my mind off my loss as much as anything could.

When I arrived in Kansas City and moved into the house I’d rented, I hung two photos of Ed over my dresser. Both bring me comfort when they catch my eye as I’m crossing the room.

As time went by I started several activities that gave new meaning to my life. First I wrote a book. Later I began blogging about Alzheimer’s caregiving on the Huffington Post and the Alzheimer’s Reading Room.

Next I began visiting ladies with Alzheimer’s in a local memory care facility. I enjoy my visits and I receive so much more than I give.

I still miss Ed sometimes. I wish he could see my lovely new home and know about my new job. I wish I could hear him say, “Marvelous, Marie! Superb! What a wonderful new house and job.” I guess I’ll just have to settle for feeling it in my heart.

3 Tips for Surviving Alzheimer’s Caregiving

Friday, November 7th, 2014

I want to share with you the events and situations that helped me cope, hoping they may help you as well.

  1. I Kept a Journal

I chronicled my visits to Ed, his gradual decline, my feelings, and my day to day activities. It gave me a way to document my caregiving journey and to remember the positive events as well as the negative ones.

  1. I Learned How to Get Along With Ed Better

As Ed’s dementia progressed he became extremely difficult to get along with. A social worker friend gave me 3 pieces of advice:

–       Don’t bring up topics that might upset Ed

–       If he does get upset, change the subject quickly

–       Don’t argue, correct or contradict him

When I finally mastered these tips, our arguments decreased considerably.

  1. I Took up a Hobby About Which I Became Passionate

I took up photography and developed a specialty – taking close up photos of single stem flowers against black backgrounds. The best thing about my new hobby was that time stood still when I was doing “a shoot.” This was the key to its value. It took my mind completely off Ed and his condition. It kept me from wallowing in my grief.

Overcoming Denial When a Loved One Shows Signs of Alzheimer’s

Friday, October 31st, 2014

Alzheimer’s is, above all, an insidious disease. Its symptoms often begin so mildly and progress so slowly that it’s easy for friends and loved ones to deny them until one day there’s a ‘defining incident;’ an incident so bizarre that not even the spouse, child or other loved one can ignore it or explain it away.

Yet the disease typically starts with things of little or no significance. Not being able to come up with a common word. Mixing up someone’s name. Forgetting to turn off the stove. Things we all do from time to time. But for the person just entering the fringes of Alzheimer’s these things may begin to happen more and more often.

Years may pass between the earliest occasional confusion and the ‘defining incident.’ And during those years, the person may annoy or even anger friends and family members by being late, forgetting important appointments, being short-tempered, being unable to perform routine tasks, and exhibiting a whole variety of other troublesome behaviors.

But people noticing consistent signs of confusion and forgetfulness in a loved one should not wait for the ‘defining incident.’ One early action to take is to review the Alzheimer’s Association 10 Signs of Dementia and ask yourself whether your loved one is showing one or more of them:

  1. Memory loss that disrupts daily life
  2. Challenges in planning or solving problems
  3. Difficulty completing familiar tasks at home, at work and at leisure
  4. Confusion with time or place
  5. Difficulty understanding visual images and spatial relationships
  6. New problems with words in speaking or writing
  7. Losing things and the inability to retrace steps
  8. Decreased or poor judgment
  9. Withdrawal from work or social activities
  10. Changes in mood and personality

The Alzheimer’s Association web site has additional information about each of these items and explains how they differ from things ‘normal people’ do from time to time.

It’s easy to ignore these signs or fail to connect the dots, but when a loved one is showing them it’s essential to dig down deep into your soul and find the emotional strength to get a medical evaluation. No one wants to be evaluated, or have a loved one evaluated, for Alzheimer’s disease, but sometimes it has to be done – and the sooner the better.

 

Alzheimer’s and Humor: An Alzheimer’s Patient’s Funny Trick

Friday, October 24th, 2014

After finishing each meal at the Alois Center, Ed would always clean his spoon with a napkin, wrap it in another napkin, put it in the breast pocket of his sport coat and take it back to his room. He knew very well he shouldn’t be stealing those spoons.

Pretty soon his room would have spoons all over the place so the staff would go get them and return them to the kitchen. But sure enough, the next day he would start a new collection.

I often sat with him when he was eating and had observed this behavior many times.

Finally, one day when he started his cleaning ritual I said to him, “Don’t take that spoon, Ed. It doesn’t belong to you. It belongs to the facility.”

“Oh, no!” he said, loudly. “I take them every day with no remorse!”

We both had a good laugh about that.

The point of this story is that some people with Alzheimer’s can be playful sometimes. Also, they may make up their own activities.

 

 

 

 

 

 

 

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.