Posts Tagged ‘Caregiver’

Using Music to Connect With a Person Who Has Alzheimer’s

Sunday, April 20th, 2014

Ed & the Violinist 1

 

 

 

It’s well-known that music often reaches people with Alzheimer’s in a way we cannot. But sometimes it’s better not to use it. Learning when to use music and when to not use it is the trick. Here are some examples.

My Romanian life partner, Ed, had always loved classical music. So I once put on a Mozart symphony and pretended to be conducting. I emulated the flashy type of conductor he loved. When I finished he looked at me with wonder and whispered, “What you did was so beautiful!”

Another way I used music with Ed was that I hired a classical violinist to come and play a concert just for Ed in his room. He was absolutely ecstatic

I visit several ladies with Alzheimer’s at a local memory care facility. Some just love listening to music – others don’t. I have asked each what type of music she likes and I have tried playing music for most of them.

Two loved it deeply. For example, Ruth (not her real name) loves big band music. When I play it for her she is transformed into one of the happiest people you’d ever want to meet.

Another lady (Carolyn – since deceased) also loved music – especially Tchaikovsky. So I played selections of the Nutcracker Suite every time. She smiled and tapped out the rhythms on her lap. And she thanked me so much for bringing the music

There are times, however, when it would probably be better not do so. For example, as much as Carolyn loved listening to Tchaikovsky, when her health deteriorated considerably she once told me that the music was confusing. I realized that I should stop bringing music for her.

This goes to show that while a person may love music at one stage of their illness, their desire to hear it may change over time, and it’s important to continually monitor their interest.

Another lady, Ethel, is a devoted Christian. So I took some hymns to play for her. She didn’t show any reaction to the music. She was far more interested in my portable CD player. So I continued playing the hymns, but it was to give her the pleasure of seeing the CD player, not necessarily hearing the music.

Still another of “my ladies,” Nancy, loved Elvis. But when I played it for her she became distressed. She told me it was so beautiful it made her cry. Consequently, I don’t play Elvis anymore.

When I asked Sue what kind of music she liked, she said, “Oh, I don’t know. I’d rather not sit around listening to music.”  She said this in a fairly stern tone of voice, so I don’t play any music for her either.

Does anyone have any stories related to using or not using music at your visits?

 

Gifts Can Bring Joy to a Person With Alzheimer’s

Wednesday, April 16th, 2014

Everyone loves getting presents and people living with Alzheimer’s are no exception.

I originally learned about the importance of gift giving from my beloved Romanian life partner, Ed. When he put on a new pair of shoes I brought him, he exclaimed, “These are the most beautiful shoes I’ve ever had.

They weren’t especially beautiful. They were just an ordinary pair of black Dr. Scholl’s with Velcro fasteners. But to him they were special.

Then one day on a whim I bought him a little yellow stuffed chick.  I was afraid he would be insulted that I took him a child’s toy.

But I didn’t have to wait long. Soon he held it to his chest, petted it and kissed it. Then he looked at me and said, “Thank you! Thank you so much!  I never had such a lovely present in all my life!

More recently the value of giving gifts to people living with Alzheimer’s was reinforced by some of “my ladies” – women I volunteer to visit at a local memory care facility.

One day I took Ethel a small wrapped gift – a decorative note pad with a magnet on the back.  When she saw it her whole face lit up.

She was so excited that I was afraid she was going to be disappointed. So I told her, “It’s just a small gift, Ethel. It’s no big deal.”

Her response was very touching.

“I know, honey, but it’s a present.”

By that she meant she was happy to get a present no matter what it was.

Another “lady” is Ruth. Ruth loves big-band music, so I took her a CD of Glenn Miller. She was ecstatic. It was a true joy to see her so happy.

Here’s a tip: I always wrap the presents, even if they are little things you might not ordinarily wrap, such as a couple of cans of Dr. Pepper I took Ethel. She really enjoyed tearing off the wrapping paper.

You should be prepared, however, for a gift to be instantly set aside and subsequently ignored.

You see, people living with Alzheimer’s apparently enjoy seeing and unwrapping a present more than they actually enjoy having it. I think that’s because they immediately forget about it once they’ve opened it.

The gifts bring them joy for a short time and that’s what matters.

Does anyone else have any stories about giving gifts to their loved one?

Grief and More Grief – A Tragic Emotion for Caregivers

Sunday, April 13th, 2014

At the beginning of the caregiving journey many experience deep grief and I was no exception. I kept a journal of my time. Here are some of my entries about grief.

Grief: I just realized something very sad today. Namely, Ed doesn’t need me anymore. For years after he stopped driving, he needed me for everything – to deliver groceries, medicine, library books, dry cleaning – you name it. I also did many other tasks far too numerous to list here.

But now his every need is taken care of. When you take care of someone so much for so long and then they no longer need you at all, there is such an enormous vacuum and you feel so useless and unneeded.

More Grief:  Today I’m thinking back to the time just before Ed went to the Alois Center.  I went to his apartment every day in an effort to make sure he was safe.

When he went to the Center, I visited every day – because it was hard to let go and let the Center take care of him, because I wanted to see him, and because I had no earthly idea what else to do with my time after years of caregiving.

I missed him all the time and was lonely for the first time in my adult life. Sometimes I even forgot where he was and thought to myself I’d stop at his apartment on my way home from work.

I have tried everything I can think of to have more “meaningful” (to me) conversations.  (I should point out that he is ecstatic every time I visit, but at this point I seem to care only about myself.)

Occasionally it works, but usually it doesn’t.  It makes me angry at him, even though I know he can’t help it.  I never want to go.  I usually don’t have the mental energy to try to have an interesting exchange so I just sit sullenly and listen to his oft repeated (word for word) monologues.

I need to find a way to adjust but I can’t imagine how I ever will. I’m deep in the clutches of grief.

Interminable, Insurmountable Grief:  Today I’ve been thinking a lot about grief. About how you lose them, but they’re still here.  About how many years the grief may last before they are finally gone – and then you have to begin grieving all over again.  It seems interminable and insurmountable.

This is all overwhelming to me.

 

Entertaining People With Early – to Mid-Stage Alzheimer’s

Sunday, April 6th, 2014

At the early stage of Alzheimer’s you can often entertain patients by engaging them in whatever fun activities they enjoyed before developing Alzheimer’s.

Some games may need to be adjusted, however, to accommodate your loved one’s diminishing mental capacity. For example, you may need to play a child’s card game instead of bridge; checkers instead of chess. Or, if the person previously enjoyed jigsaw puzzles, you may need to find ones with fewer and larger pieces (see below for a source of these).

At the mid stage of the disease, people with Alzheimer’s may have more or less the mental and social skills of a toddler. While it’s excellent to do the standbys – things like looking at old pictures or watching movies together, those are somewhat passive.

With a little thought you can find more active ways to spend time together, such as giving your loved one toys or other “props” that the two of you play with together. The key words here are “play” and “together.”

Some people with Alzheimer’s cannot be reached by any means, but try experimenting with the ideas mentioned here.

Note: You can find puzzles designed especially for Alzheimer’s patients at Max Wallack’s website, www.Puzzles to Remember. They come in various sizes and number of pieces to accommodate the skills of early or middle stage patient and they have scenes that are appealing to people with Alzheimer’s.

Do any of you have any other methods for entertaining people with early- to mid-stage Alzheimer’s?

The Pros and Cons of Placing Your Loved One in a Facility

Wednesday, April 2nd, 2014

Author’s Note: This post assumes there is a decent, affordable facility within a reasonable driving distance. It also assumes that the person with Alzheimer’s is in the mid- late-stages of the disease, and high quality caregiving at home is becoming increasingly more challenging if not impossible.

CONS

People living with Alzheimer’s typically want to remain in their own homes. They want to be in a familiar environment and close to their loved ones.

Family members are sometimes adamantly opposed to placing their loved one in a facility. Some view this almost as a criminal act. In many cases it’s even more difficult because if the person with Alzheimer’s staunchly objects, family member(s) may feel incredibly guilty.

In addition, the caregiver may have promised his or her loved one many years before to never put them in any kind of facility for any reason. Breaking that promise would be extraordinarily difficult. Again, if the caregiver decides to go ahead with placement he or she would probably end up riddled with guilt.

Caregivers may feel they can provide care that is superior to that delivered in a good facility, due to their love and devotion. Although personnel in a facility may indeed care about their residents, they will probably not have the depth of love that family members feel.

Finally, financial issues need to considered. There may be high quality facilities near you but you can’t afford them. In this case you may have no other option than caring for the person at home.

PROS

It takes a large team to care for people living with Alzheimer’s, especially those in the mid to later stages.  They need a doctor on call 24 hours a day. They need a nurse available at all times. They need aides, a social worker, activity professionals, cooks and laundresses.  And they need to be around other people for social stimulation. They need 24/7 supervision and they need to be in a safe, secure environment.

Providing for all of these needs can be done but it’s a full-time job. In many cases the primary caregiver has to work either full- or part-time and thus can’t provide the needed care.

The decision to place a loved one in a care facility can be agonizing, but caregivers need to consider the following: 1) Long-term care placement can be the most loving choice for their loved one and 2) Caring for the loved one is probably seriously affecting their own physical and mental health and wellbeing.  People simply can’t be good caregivers if they are exhausted and burned out all the time.

You may be hesitant because you think the person will never forgive you for placing them in a facility. Most people with mid- late stage Alzheimer’s, however, soon adjust and even forget they’ve been moved at all.

Deciding what to do can be nerve-wracking and heartbreaking, but it’s something you will probably need to do at some point. Take a step back and try to be objective. Consult with friends and other family members.  You may also want to talk with your attorney, spiritual leader and/or your physician and your loved one’s physician (if they are not the same).

Do any of you want to comment on how you arrived at your decision regarding this issue?

Is Alzheimer’s Always Depressing? I Think Not

Saturday, March 29th, 2014

Alzheimer’s is considered a deadly serious disease and deservedly so. But I ask this: Does being ‘serious’ mean that it is horrible and depressing? Yes, it can be horrible and depressing. But is it always that way? I think not. I think to some extent at some times it depends on the attitude of the beholder. Let me illustrate with two hypothetical vignettes.

John is distraught when he visits his wife, Jean. First of all, he finds the facility per se depressing. While walking to his wife’s room, he passes several residents sitting in wheel chairs. Most are either staring into space or else their heads are hanging down and they appear to be dozing. What a waste of human life, he thinks.

Worse still is his wife’s condition. She can’t bathe or dress herself. She needs help eating. She carries a baby doll around with her everywhere she goes. She acts as though it’s a real baby. He has tried and tried to convince her it’s just a doll, and he’s tried to get her to give it up. All to no avail.

Jill is another regular visitor to the facility. Her mother, the past president of a major university, is in a wheel chair and can often be found playing Bingo, which she can’t play unless one of the aids helps her. Her mother’s other favorite activity is the sing-alongs held every Tuesday and Thursday. Most days she doesn’t even recognize Jill.

Jill’s reaction to the situation, however, is very different from that of John. Sometimes Jill arrives during the Bingo game and sits beside her mother as she’s playing. Instead of thinking how much her mother’s mental capacity has declined, she notes that her mother has a smile on her face. Jill is so happy that there are still things her mother enjoys.

Although her mother usually doesn’t recognize her, it’s obvious that she enjoys Jill’s visits. As far as the diapers her mother wears, Jill isn’t upset by them. There’s nothing inherently distressing about diapers. All babies wear them and that isn’t depressing to anyone.

To a great extent, our attitudes about long-term care facilities and people with dementia influence how we view them.

If we are in denial and try to insist that our love one talk and behave like a ‘normal’ person, we will be miserable every time we see the person.

If we focus on what our loved one can’t do rather than what they still can do, visiting will be painful. If we focus on comparing the person’s current mental state to their previous one, we will suffer.

If we think about our own unhappiness rather than on our loved one’s reaction to the same issue, we will never be able to accept the person’s illness. We will never be at peace with the situation.

Sometimes the best thing to do when something upsets us is to ask whether our loved one is upset by it. You may be distressed, for example, because the aids don’t style your mother’s hair very well. But ask yourself is my mother upset by it? If not, then let it go.

Jill enjoys her visits because she accepts her mother just as she is. She doesn’t try to change her. She interacts with her at her level – not her previous level.

No, Alzheimer’s doesn’t always have to be depressing all the time.

Would anyone like to share a positive experience with a loved one living with Alzheimer’s?

 

 

 

 

 

Friendship Between Men With Alzheimer’s

Saturday, March 15th, 2014

I’ve heard that people with Alzheimer’s enjoy having friends who have it as well. This story illustrates that beautifully.

One day a stocky little man shuffled to a stop in front of Ed’s door at the Alois Alzheimer Center. I was surprised when Ed (never one to easily make friends) smiled and shouted out, “Come in – Come in.”

The man shuffled in, advancing in short jerky movements.

Ed turned and addressed me. “Marie, this is my dear friend, John. We’ve been best friends for years.”

And the little man offered, “Yes, we’ve been best friends forever.”

Ed smiled and patted the empty space next to him on the other side of the sofa and John sat down. Then – and you can imagine my shock – they started holding hands and both continued telling me how many years they had been best friends.

I was delighted to see that Ed had a friend, one of the few male friends he’d had since coming to the US in the mid 1960’s. Wanting to be gracious to Ed’s new friend I introduced myself.

Then I asked him, “How long have you lived here at the Center?”

He promptly responded “All my life!”

So here we had two elderly gentlemen with dementia sitting side by side holding hands and smiling like a couple of 6-year old girls sitting on a bench waiting for the school bus.

Even though they couldn’t have been friends for more than the six months Ed had been at the Center, it was comforting to me to know that Ed felt as though he’d had this friend for many, many years.

I vowed right then and there to bring my camera on my next visit so I could photograph these two best friends together, holding hands and sitting so happily beside each other.

 

 

 

 

How I Want to Be Treated If I Develop Alzheimer’s

Tuesday, March 11th, 2014

Author’s Note: If you agree with the content of this article you may want to print it out and put it with your Will and Power of Attorney for your children to read should it ever be necessary. Also note that this post is much longer than most of my posts due to the importance of all the details it contains.

Oftentimes it’s difficult to know the best way to interact and communicate with a person who has Alzheimer’s. And so I’m going to let people know in advance how I would like to be treated should I develop this disease.

First of all I want to be placed in a care facility, and it should be the best one available that I can afford. I don’t want anyone making the supreme sacrifice to care for me at home. Besides, it’s quite possible that I will receive better care if I’m some place where there are numerous people involved in my care, rather than having one person who will try to do it all.

I want people to realize that regardless of my behavior I am probably still “in there” to some extent. By this I mean that I may enjoy being visited even if I don’t recognize the person visiting me. It could also be that I enjoy being visited but just can’t express that verbally.

I want to be treated with respect, which means people should not talk about me negatively in my presence. If I am ‘still there’ I may understand every word even if I don’t talk anymore. I will also want people to knock before entering my room and preserve my dignity by stepping out if I’m receiving personal care.

I want my feelings to be validated. I do not want people to try to immediately ‘explain away’ my feelings. Rather, I want people to listen to me and acknowledge my fears, concerns, and perhaps sadness, and only then change the subject to something more pleasant.

Don’t insult me by talking down or baby talking to me. That won’t be necessary. Talk to me the way you always have. If I don’t understand that, baby talk will probably not help.

Don’t keep asking me questions that begin with “Do you remember?” Of course I can’t remember. If I could remember I wouldn’t be there in the first place.

I want people to be patient and not correct me or disagree with me no matter how wrong my statements may be. This will just either embarrass me or make me angry. Please just go along with me unless there is some compelling reason not to – and there rarely is.

If I develop Alzhiemer’s I won’t act ‘normal.’ I hope you will not try to make me act normal. That will just make me frustrated and/or angry. It will also upset you. Interact with me at my level and we’ll both be contented.

If I should keep asking for someone who has passed away – such as my Romanian life partner, Ed – I want to have that desire validated as well. But I would not mind if people then tell me some little “white lie” as to where he might be and that he will come shortly. That would probably relieve my mind and make me feel better

I want to have meaningful activities in which to participate every day. Preferably ones in which I can interact with other people. Possibilities include sharing things such as listening to classical music – especially opera.

Other activities I might enjoy would be painting or having visits from a dog, just to name a few. It will be very helpful if my loved ones and staff at my facility experiment to find out what I like to do. It may be very different from what I like now.

One way to find out what I like may be to ask me. It could be that I will be able to tell you. And if I do tell you something I’d like to do, try to arrange it if there’s any way you can.

If you do stumble upon something I really like, please keep doing it. You may get bored but it could be bringing me great pleasure.

I may keep repeating the same story, asking the same question or exhibiting the same behavior over and over. In such a case I want people to be patient and always react as though it’s the first time. Otherwise you’ll be exasperated and I won’t understand why.

Bring me wrapped presents – no matter how small – on a regular basis. I may forget them quickly but enjoy very much receiving and unwrapping them. Everyone likes getting presents and I will be no exception.

Don’t complain to the facility about every little thing. If you don’t like the way they’re dressing me or styling my hair, for example, let it go unless it’s seriously disturbing me. Please just make sure I’m getting proper medical care and any needed assistance with personal hygiene.

Remember that – like most people with Alzheimer’s – I live only in the present. Find and do things that will bring me pleasure, even if you know I won’t remember them a half hour later. At a minimum it may put me in a good mood the rest of the day, even if I don’t know why.

If it appears that I have less than six months to live, please order hospice services for me. It may be upsetting to you, but I will probably relish the extra attention. If you’re having a problem facing my impending death, get counseling or find some other way to cope. I will need your support.

Above alI, I would ask that people who love me now keep loving me and expressing that love in all the different ways they can think of. One of them is bound get through and reach me on some level.

This is how I want to be treated if I develop Alzheimer’s – with respect, dignity, patience and love.

Making Final Arrangements for a Terminally-Ill Loved One

Friday, March 7th, 2014

When a loved one is terminally ill it’s a good idea to make all of the final arrangements in advance. Although you can’t arrange everything in advance there are several tasks you can complete.

Call List: One of the first things you will have to do when the person dies is inform family members and friends. It’s a good idea to prepare a list, including phone numbers, of people who will have to be notified.

Obituary: You can write it or have someone else prepare it.

Eulogy: The first step is to determine whom you’d like to deliver it and then ask them if they will do it. Have the person write as much as possible in advance. f you want to deliver the eulogy yourself go ahead and prepare it.

Funeral:  Go to a funeral home and make (and pay for) all the needed arrangements so when the time comes all you have to do is place one call to them.  Also, This is also a good time to select the music you want played. Other tasks include designating pall bearers, selecting any prayers you want read, making up the official program, selecting the person you want to officiate, and choosing a religious speaker if you want one.

Reception after the Funeral: If you plan to have some sort of reception or meal after the funeral, figure out where you want to have it. If it will be in someone’s home, pick out a caterer unless you will ask your guests to each bring a dish.

 Memorial Service (If you plan to have one):  Think about where you’d like for it to be held. Other duties are the same as those for a funeral service.

 Burial Location:  If you’re planning to have a traditional burial and your loved one doesn’t have a plot, select a cemetery and purchase one. You can also look into headstones at this time.

 Disposition of Cremains:  If the person will be cremated, determine where you want the cremains to be placed. And when you’re making those arrangements, which it’s best to pay for in advance and select an urn.

Nursing Home Placement: Damned If You Do; Damned If You Don’t

Tuesday, March 4th, 2014

I’m talking here about placing your loved one with Alzheimer’s in a care facility. Virtually no one wants to do it and few if any people with dementia want to go.

What if you have to work full-time and can’t provide the 24/7 care dementia patients require – especially those in the later stages of the disease? What if you can’t afford an in-home care service that could help make it possible for the person to remain at home?

There are other considerations as well. Your loved one may habitually forget to turn off the stove, leading to a risk of fire. He or she may be up all night, causing you to be up as well. You may both become sleep deprived – a serious health risk for both of you. You have to consider your own health, not only for your well-being but because you can’t provide good care for the patient if you’re exhausted all the time.

Sometimes nursing home placement is the best (or even only) solution for your benefit and the benefit of the person you’re caring for. But many people feel like institutionalizing their loved one is a cop out – virtually a crime. They feel it would be tantamount to abandoning the person they love most in the whole world.

If you do it you may feel terribly guilty. But if the person really needs to be in a facility for his or her own safety and well-being you may end up feeling even more guilty if you don’t do it. If something happens to your loved one – such as wandering off or sustaining an injury from a fire or other hazard, you’ll never forgive yourself. And that’s the crux of it. Damned if you do; damned if you don’t.

So how do you decide what’s best? I suggest you ask yourself two questions: 1) Would being in a facility provide your loved one with better care, more personal attention, more opportunities for socialization and – especially – greater safety? and 2) Is taking care of the person at home wrecking your own physical and mental health? If you answered “yes” to either one of these questions it may be time to start looking for a good facility.