Posts Tagged ‘Caregiver’

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.

 

 

 

Could Your Family Benefit From Family Therapy?

Tuesday, July 29th, 2014

Conflicts can arise when a family member has Alzheimer’s. Carole Larkin, a geriatric care manager in the Dallas area, says that 30% of her family clients experience conflict. And she says that is doubled for blended families. Most conflict centers around what type of care should be provided to the person with Alzheimer’s. Other arguments typically involve money and facility placement.

According to an article on the Mayo Clinic website, family therapy is “a type of psychological counseling done to help family members improve communication and resolve conflicts.”

The Mayo Clinic article states, “Family therapy can be useful in any family situation that causes stress, grief, anger or conflict.” Having a family member with Alzheimer’s usually causes all of those.

The article continues, “It can help you and your family members understand one another better and bring you closer together. Family therapy sessions can teach you skills to deepen family connections and get through stressful times, even after you’re done going to therapy sessions.”

Conflict is to be expected even in the best of families, and this can increase if one member has a serious disease, such as Alzheimer’s, that requires extensive caregiving.

So how do you know if professional counseling could be needed for your family? I would suggest you consider it if at least one family member’s mental health and daily functioning are being seriously affected by the strife.

Another sign – and an important one – that outside help is needed would be if the constant bickering is negatively impacting the quality of care being provided to the person with Alzheimer’s.

What If Some Family Members Refuse to Participate? Don’t be surprised if some family members flat out refuse to take part. And don’t be surprised if it’s the one(s) considered by others to be the source of much of the conflict.

You might try having their primary care provider, clergy person, or lawyer speak to them about it. Sometimes people pay more attention to someone outside the family.

If they still refuse, the other family members can go ahead without them. The therapy may still be helpful to the ones who do go, and it may help them better cope with the one who won’t attend the sessions.

Could a Therapist Help You? When to Consider Getting Professional Help

Friday, July 25th, 2014

Some Indications You Might Benefit From Seeing a Therapist: There are several situations in which people can benefit from therapy. Two important ones for Alzheimer’s caregivers are:  When you feel overwhelmed by your stress or  when you are seriously depressed.

Let’s look at each of these in a little more detail.

Stress: The Alzheimer’s Association lists the following as symptoms of caregiver stress:

  1. Denial
  2. Anger
  3. Social withdrawal
  4. Anxiety
  5. Depression
  6. Exhaustion
  7. Sleeplessness
  8. Irritability
  9. Lack of concentration
  10. Health problems

Depression: Some of the symptoms of depression are the same as those for stress. The Alzheimer’s Association lists the following symptoms of depression:

  1. Becoming easily agitated or frustrated
  2. Feelings of worthlessness or guilt
  3. Feelings of hopelessness
  4. Thought of death, dying or suicide
  5. Disturbed sleep
  6. Fatigue or loss of energy
  7. Loss of interest or pleasure in usual activities
  8. Difficulty thinking or concentrating
  9. Changes in appetite or weight
  10. Physical symptoms that do not respond to treatment, such as headaches, digestive disorders and pain.

Everyone knows that Alzheimer’s caregiving is almost always stressful and depressing. Virtually EVERY caregiver has more than one of the above symptoms. So how do you know if you could benefit from professional help? I would suggest you consider it whenever you have one or more of the above symptoms, they are significantly interfering with your daily life, and nothing else has helped (such as a support group, group therapy, respite care, pastoral counseling, etc.)

Some Examples of Specific Ways a Therapist Can Help You: Therapists can help people in many ways. Three important ones for Alzheimer’s caregivers are:

  1. Help you overcome your denial and come to terms with your situation
  2. Help you manage your depression better (if you are depressed)
  3. Help you improve your stress management techniques

 

How You Can Help Someone Who Is an Alzheimer’s Caregiver

Monday, July 21st, 2014

According to the Alzheimer’s Association, 15 million people are serving as caregivers to people with Alzheimer’s, providing over 1.7 billion hours of unpaid care every year. Carrying out their duties has a negative effect on their physical and mental health.

With so many people being Alzheimer’s caregivers, chances are good that you know one – either a friend, relative or neighbor. And chances are that you’d like to help, but simply don’t know how.

If you really want to be of service, instead of just saying, “Let me know if there’s anything I can do,” you may need to figure it out yourself and volunteer for a specific task(s).

Here are but a few things you can select from:

  1. Help clean the house
  2. Take over extras from a meal you’ve cooked for your family
  3. Do the laundry
  4. Do the grocery shopping
  5. Pick up medicines from the pharmacy
  6. Volunteer to run other specific errands
  7. Mow the lawn and/or do other yard work (assuming the person doesn’t use a lawn service)
  8. Visit and just let the person talk about feelings
  9. Drive the person with Alzheimer’s to their daycare center (if they’re going to daycare)
  10. Take the person with Alzheimer’s to the doctor
  11. Take the person with Alzheimer’s out for a drive
  12. Look after the person with Alzheimer’s in your home for a few hours

Whatever you select, try to be specific and try to volunteer to do it on an ongoing basis. Make sure you will be able to continue your help before you make a commitment.

 

 

When You Become the Parent to Your Parent

Sunday, July 20th, 2014

People who have Alzheimer’s disease gradually lose the ability to manage their own affairs. When this happens you will need to step in and help out. In effect, you become the parent.

The amount of parenting needed depends in part on the person’s living arrangement. A parent living with your or with a spouse who can help them or a parent living in an assisted living or long-term care facility where a considerable amount of help is provided will need less assistance than a parent living alone.

But regardless of where your mother or father lives, you will still probably have to function as a parent in many ways, and your specific duties will expand and increase considerably as the illness progresses.

10 Important Responsibilities

There are numerous tasks and responsibilities you will have to assume or at least help out with. 10 important ones are:

  1. Do laundry for them
  2. Clean their home
  3. Do their grocery shopping and other errands
  4. Prepare their meals
  5. Purchase their medicine and remind them to take it
  6. Get them to stop driving when or if appropriate
  7. Arrange for entertainment and engage them in meaningful activities
  8. Provide social stimulation by having them spend time with friends, relatives and/or neighbors
  9. Handle their financial and legal affairs
  10. Make health care decisions on their behalf

Some of these duties will be more difficult than others to carry out. Typically, getting someone to stop driving and/or arranging for placement in a facility if they don’t want to move are the most stressful and challenging to achieve.

In these cases you will need to provide “tough love” – much as they may have shown you when you were an adolescent. You will have to be guided by your determination of what is best for them and then go forward with no hesitation, regardless of their desires and oft-stated objections. This will not be easy, but it has to be done. You will have to assume the role of parent and be firm in order to prevail for their benefit.

 

 

 

 

10 Things People With Alzheimer’s Taught Me

Wednesday, July 16th, 2014

I was a caregiver for Ed, my beloved Romanian life partner, for seven years when he had Alzheimer’s disease. Furthermore, I currently volunteer to make weekly visits to four women who live at Clare Bridge, a Brookdale Senior Living memory care facility in Overland Park, Kansas. (I refer to them as “my ladies.”) Here are the ten most important lessons these people have taught me.

  1. Simple pleasures can bring great joy to a person with Alzheimer’s
  1. People with Alzheimer’s usually enjoy getting gifts – no matter how small
  1. Pets, children, music and art may reach them on levels we cannot
  1. Just because they don’t talk doesn’t mean they aren’t perfectly aware of what’s going on around them and what people are saying to and about them
  1. There’s usually no reason to tell them someone is dead (Tell them a white lie instead – that the person will be back soon)
  1. Correcting them about something will probably either embarrass them or else start a big argument
  1. People with Alzheimer’s usually adjust to change more quickly than we do and they soon forget unpleasant things that happen to them. We may be the ones who continue suffering
  1. They can still enjoy life, even if only for brief periods of time
  1. People with Alzheimer’s may remember past love and also experience love in the present
  1. People with Alzheimer’s can be humorous at times – Then we can laugh with them.

 

Moving on After the Death of a Loved One With Alzheimer’s

Saturday, July 12th, 2014

Grief must be fully experienced before you can move on. You need to allow yourself time to grieve. It’s important to take good care of yourself physically and emotionally during this time. It will also help to realize that with time your pain will lessen and you will be able to move on.

At some point – when you feel you’re ready – try to begin “returning to the world.” Take up a new hobby or go back to one that lapsed while you were caring for your loved one. Spend more time with the family members and friends you may have seen less in the preceding months or years. Some people also benefit from doing volunteer work.

Much to my surprise, one day I suddenly realized that I’d completely forgotten the third anniversary of Ed’s death a month earlier. That’s when I knew my grief was largely resolved.