Posts Tagged ‘visit’

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?

 

 

 

 

 

 

Why You Should Keep Visiting Loved Ones With Dementia – Even If They Don’t Recognize You

Thursday, October 3rd, 2013

Here are some reasons to keep visiting loved ones with dementia, even if they don’t recognize you:

1)    They May Recognize You but Not Be Able to Express it

It’s always possible that your loved ones do recognize you but are just not be able to show it.

I had a personal experience which I believe demonstrates this. Doris, a lady I volunteer to visit, was so frail that the most I could do with her was hold her hand. She never showed any sign of recognizing me from my previous visits.

Then one day as I was holding her hand she put her other hand on my arm and began caressing it. I had the distinct feeling that she remembered me. I don’t think she would have been so openly affectionate with a total stranger.

2)    They May Remember How Often You Visit Even if They no Longer Recognize You

I was speaking at an Alzheimer’s family support group recently. A man there told me that he visited his wife, who had advanced-stage dementia, nearly every day even though she didn’t recognize him.  But whenever he missed a day, she’d always say, “You didn’t come yesterday.”

 3)    They May Enjoy Being Visited, Even if They Don’t Know Who You Are

Although Ed, my Romanian life partner with dementia, always recognized me, he had many visitors he didn’t remember. I observed some of these visits and it was always perfectly obvious that he enjoyed spending time with them.  When they were there he’d often hold hands with one of them the whole time. And he’d have a long, pleasant talk with them.

4)    You May Feel Gratified That You’ve Given Them Pleasure

Although the main focus of your visits are your loved ones, you might find there’s an unexpected benefit for you, too. You may initially feel hurt or frustrated that they don’t remember you, but if you can get over that hurdle and if it’s clear that they enjoy the visit, you will probably feel gratified that you gave them that pleasure.

My 3 Biggest Regrets as an Alzheimer’s Caregiver

Monday, August 19th, 2013

Marie & Ed in Love Again

 

In many cases I was successful in finding the way forward when I was taking care of Ed, but in other situations I faltered. Looking back at that period now I have three major regrets.

1.   I Didn’t Place Ed in a Nursing Facility Soon Enough

Ed needed to be living in a nursing facility at least two years before I finally got him into one. I had power of attorney and Ed had an official diagnosis of “dementia.” Therefore I could have taken him even against his will. But I was weak. I was an idiot, actually. I was afraid he’d never forgive me and never speak to me again. I put our relationship ahead of his safety and welfare.

I regret having waited so long. If something had happened to him while he was living alone I never would have forgiven myself. I (and he) was just lucky he didn’t get hurt or lost

2.  I Didn’t Touch Ed Enough

When Ed was living in the nursing home it was obvious that he needed and enjoyed being touched. When visitors came to see him he would almost always hold their hand most if not all of the time. Why I couldn’t see that he needed me to touch him is beyond me, and I have been sorry for it for years.

3.   I Didn’t Visit Ed Enough Near the End of His Life

Near the end of Ed’s life I began to visit less often because I was preoccupied with getting a new job. And so I visited less. Whereas I’d earlier visited two to three times a week, I began visiting only once a week and a couple of times I even skipped an entire week.

So these are the things I wish I could do over. But I can’t. All I can do is hope this article will save someone else from making the same mistakes.

 

Caregiving Pearls

Saturday, June 8th, 2013

1.    Don’t Be in Denial: It’s only natural to be in denial when a loved one begins to show signs of dementia, but that only prevents the person from getting a diagnosis, starting treatment, and planning for the future.

 2.    Don’t Ask, “Do You Remember?” Of course they can’t remember. If they could remember they wouldn’t be diagnosed with dementia. Asking if they remember some person or event could make them frustrated.

 3.    Do Interact With the Person at His or Her Level:  You may want to interact with the person the way you always have, but that isn’t going to be possible. Instead, figure out at what age they appear to be behaving, then connect with them at that level.

 4.    To Connect With People Who Have Alzheimer’s, Put Something Meaningful in Their Hand: This is a valuable tip provided by Tom and Karen Brenner in their book, You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care. You may have to experiment some to find out what is meaningful to any specific person.

 5.    To Connect With People With Late-Stage Alzheimer’s Try Introducing Them to Children, Pets, Music or Art:  These four activities will often reach people in the late stages of the illness – even if they hardly talk anymore. 

6.    Don’t Argue, Correct or Disagree: You can’t win an argument with a person who has dementia – so don’t even try. Neither should you contradict them. It will make them dig in their heels even more strongly.

 7.    Don’t Bring up Topics That May Upset the Person: If you know your loved one will get upset if you talk about politics, for example, don’t start the conversation in the first place. It will probably lead to a battle you don’t want to have.

 8.    Do Quickly Change the Subject If the Person Does Get Upset: If the person does get upset one of the best things you can do is redirect their attention to something else, preferable something pleasant.

 9.    Don’t Quit Visiting When the Person Doesn’t Know Who You Are:  Just because your loved one does not recognize you doesn’t mean they have no feelings. People with Alzheimer’s may enjoy being visited even if they don’t know precisely who the visitor is.

 10.  Do Take Care of Yourself:  Being an Alzheimer’s caregiver is hard work. The gold standard book on Alzheimer’s caregiving isn’t entitled The 36-Hour Day for nothing. Take good care of yourself for your benefit and for the good of the person for whom you’re caring. You can’t be an effective, compassionate caregiver if you’re exhausted and burned out all the time.

 

How to Behave When Visiting a Nursing Home

Sunday, October 21st, 2012
  • 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.
  • Keep the conversation positive and refrain from arguing. This is especially important when visiting a person with dementia.
  • Don’t take unruly pets or children to visit.
  • Don’t wake up residents who are sleeping. They probably need the sleep.·
  • Don’t take food or beverages your loved one isn’t allowed to have.
  • Don’t have large groups of family and/or friends visit at the same time.
  • Don’t stay too long.
  • Do not interrupt the resident’s activity time.
  • If the facility has visiting hours respect them
  • Keep the lines of communication open. Should there be a problem communicate it promptly and directly to the administrator or director of nursing
  • Don’t order the staff around.
  • Don’t give tips or bring gifts for the staff if the facility has guidelines forbidding them. If no gifts are allowed give handwritten thank you cards to those you want to recognize
  • Don’t be a chronic complainer.
  • Don’t have unrealistic expectations. Understand that staff have many patients to care for and may not have time to do every tiny thing you’d like.
  • Don’t visit at mealtime unless you have checked with the administrator. Some nursing homes welcome visitors to dine with their loved ones; others do not.