parent with dementia: when is home care no longer the best option?

parent with dementiaSubmitted by: Kristen L. Mauk, PhD, DNP, RN, CRRN, GCNS-BC, GNP-BC, FAAN, President of Senior Care Central.

As a gerontological nurse practitioner, senior care business owner, and Baby Boomer with aging parents, I have had the opportunity to see from many perspectives the struggles that are going on in the area of senior care. One of the most devastating problems I am currently seeing is caring for a parent with dementia. As most readers know, dementia (of which Alzheimer’s disease is the most common type) is a disease of progressive forgetfulness that often occurs slowly over years. Nancy Reagan called it “the long goodbye”. Many adult children want to care for their parent in the home but as dementia progresses, it becomes more difficult to provide a safe environment and still keep the rest of the family functioning in a healthy way.

Care is usually more manageable in the early stage of dementia but in the middle and late stages, behavior issues such as wandering, angry outbursts or poor safety awareness may emerge and make care at home more challenging or nearly impossible. There is often a negative event, such as a fall with injury, that may prompt family members to make a decision to transition their parent to a facility.

So, if you are caring for a parent with dementia in your own home or theirs, how do you know when it’s time to make a change in care setting? Here are two simple questions that you can ask yourself.

1) Is the current situation keeping my parent safe? If you feel yourself hesitating to answer yes to this, then maybe it is time to think about a safer environment that might be provided by a memory care unit with nursing staff available 24 hours per day. If your parent has wandered outside or become lost while you were taking a shower and you can’t leave them alone for even a minute without fearing something bad will happen, then think about other options for safe care.
2) Has my parent had an increase in the number of falls in the past 6 months or a year? If the answer is yes, then you should begin the conversation with the family about the need for a change in living arrangement. A common scenario that I see as a practitioner is family members trying to keep their parent at home without adequate caregivers present until the parent has a serious fall or accident that requires hospitalization and treatment. Often this negative event will cause health care professionals to encourage discharge from the hospital directly to a facility. To spare your loved one this traumatic situation and the stress that accompanies recovery from physical injuries as well as being displaced twice to unfamiliar environments for care, plan in advance as you see the signs of physical and mental decline.

If you have a comment for Dr. Kristen Mauk about your senior, write it in the box below.

If you would like to share your own story, do so here.

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death dinners at baby boomers

I came across this article & found it interesting & worth a look. The Bloomberg article, September 24, 2013, begins, “At a Manhattan dinner party, former Citigroup Inc. executive Steffen Landauer gathered an eclectic mix of guests at his apartment off Fifth Avenue to sip pinot noir, dine on seared salmon — and talk about death. The evening was conceived to confront real-life issues wrapped up in death and dying that few people like to acknowledge, let alone talk about at a dinner party. Would I want a feeding tube? Does dad want to die at home? What happens to my kids if I die in an accident along with my spouse?”

The article brings up other topics around the subject like a living will. It maintains that with these transparent conversations, one can make their desires & wishes known in advance of their passing.

As a son, I would rather know what my parents wishes are than have to guess what to do after the fact! I really don’t want that responsibilty.

To read the article in its entirety click here. If you have any comments about this subject feel free to share them in the comment box below. Also, write a story or experience of you own now.If you would like to share your own story, do so here.

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baby boomer & elder addiction spikes

6:13 spoon full of pillsI was eating dinner & watching TV, local evening news, when they aired an alarming story in regard to Baby Boomers. While alcohol is the most popular addiction for our age group, prescription drug dependence has spiked dramatically: the older we get, the easier it becomes to get a doctor to prescribe medication for aches and pains. With retirement, there are fewer consequences to suffer as there is not a workplace to hold one accountable for being under the influence. According to the newscast, “Experts predict the number of 50-plus addicts could double in the next eight years.”

My mom is in her 80’s and needs a pill to sleep and an anti-depressant to function. She was prescribed a pain pill when she fractured her rib, which has long since healed, but insists she still needs the pill for residual pain. Mom is definitely an addict, and when I have brought up my concerns about this to her physician, he brushes it off.

When I spoke to a close relative about the situation, his response was “If she’s happy, why worry?” Do I need to? And what about the anti-depressant I take because my doctor prescribed it to help me deal with the constant stress of being a caregiver? Can anyone else relate?

http://www.king5.com/health/New-face-of-drug-use—Baby-Boomers-140806613.html

Written by Evelyn in Seattle

 

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honoring your elder’s end of life wishes

6:6 POLST FormThere is an important difference between an Advance Directive and a POLST (Physician Orders for Life Sustaining Treatment) that everyone should be aware of. An Advance Directive is a general outline of a patient’s end-of-life wishes. A POLST is a bright green two page form, signed by a doctor, which addresses emergency end of life measures, such as whether or not to resuscitate a patient.

The recent California case where a care-home nurse refused to perform CPR on a patient who had fallen, has not only spotlighted the worry that an elder might be not be administered CPR, but also that this might be against their wishes. How does one verify that the facility their parent lives in will honor their request for end-of-life care? In many states, a POLST form only protects emergency medical technicians from legal liability, rather than a wide range of health care providers, like those in the emergency room or retirement facilities.

Check your state statutes and be aware of how wide a range of providers are covered by law. Many states are working to refine legislation so that it better reflects the wishes stated in a POLST.

Have you discussed end of care wishes with your parents? Do you have any helpful hints?

written by Norma

 

 

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Alzheimer’s & dementia numbers on the rise

It was startling to read, that a new report found that 1 in 3 seniors die with Alzheimer’s or other types of dementia (not the same as dying “from” it). In an AP article written by Lauran Neergard, 5.2 million Americans already have some form of dementia and the numbers will jump to 13.8 million by 2050. The implications are not only frightening as we care for aging parents but even more so in regard to ourselves. As Neergard points out, Alzheimer’s is the sixth-leading cause of death and the only one of those leading killers to have no good treatment. As a typical Boomer in her early 60’s, the odds are pretty good that either my husband or I will be affected. Having seen the horrific toll that caring for a loved one with dementia can exact from both the victims and their families, it is not a burden that we would want our children to have to deal with or remember us by. Now that the stats are out, it is time for our aging population to set a goal to find effective treatment and fund research of this fast growing disease. http://health.usnews.com/health-news/news/articles/2013/03/19/report-1-in-3-seniors-dies-with-not-of-dementia

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caring for 2 moms in 1 household!

After my father passed away at the age of 80 in 2002, my husband and I had the discussion of how we would handle my mother being alone. After a couple of years of running back and forth to tend to her needs (she doesn’t drive and was very dependent on my father), we made the decision to build a home to have not only my mother come and live with us but also my husband’s mom (who had been a widow living alone for 20 years). We had it all planned perfectly. Our single-level house was designed with loads of space for everyone to feel comfortable with plenty of privacy. One big happy family, right? Uh, not so much. While we took into consideration the wonderful opportunity it would be for our mom’s to have us there for them and perhaps the comraderie they might feel toward each other, we failed to seriously consider other issues:

1. Our privacy, our routine, our way of life.

2. The interaction between these two women, who have two very different personalities. Instead of embracing each other, they would come to see each other as competition for my husband’s & my attention.

So, now you’re saying…”What are you two nuts or something?” Well, no! We consider ourselves to be very rational and successful human beings and we expected our mothers to be the same way. Well, they’re just not. They don’t react to life the same way we do. They’re not confident or self-assured women. They’re not outgoing or social. Neither of them have close friends. They not only rely on us for help with medical issues and for help due to physical limitations (i.e grocery shopping, meal prep, etc), which we are happy to give, but they COMPLETELY rely on us for their social and emotional needs. It can be exhausting at times. They can get so wrapped up in themselves, that they forget the impact their needs have on our lives…as if we have no needs at all! Although we both love our mothers very, very much, their behavior has resulted in some resentment from us. We wonder how they could be so selfish and inconsiderate to the people who care for them the most???

I’ve read countless books and articles on care-giving for the elderly, but so far, they haven’t really given me the answers I’m searching for. I realize that having expectations for an 85/86 year old to change character traits is completely unrealistic but why doesn’t the love our parents have for us seem to have a positive impact on their behavior? We treat them with respect, are mindful of their privacy and try to interact with them on an adult-to-adult basis. Perhaps there are mysteries of the aging brain that are impossible to understand. In our hearts, we know we are “doing the right thing”, but the daily weight of it all can break us down, fill us with doubt and cause tension between us.

I come to this blog to seek out the advice and hear the experiences of my fellow care-givers, hoping to find some inspiration to keep on keepin’ on with positive energy. All I can tell you is that I share your pain, fellow caregivers! I do believe we are a special group of individuals that can learn from & support each other!!!

submitted by Barbara

 

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senior driving: when is it time to stop?

As a child of aging parents we ask ourselves this very question. As a Certified Driver Examiner in the province of Ontario, I know when it’s time. Unfortunately senior don’t either.

In this province, every driver has to go for a written and vision test when they reach the age of 80, and every 2 years after. These folks got their drivers license before Driver Education classes began and there were not so many vehicles on the road.

My father (aged 87) told me he did his drivers test, landed on someone’s front lawn and the examiner jumped out of the car and threw the license at him saying “You passed”.

If someone is involved in a car accident (whether they caused it or not) at age 65 or over, they automatically have to go for a road test, which is a regulation.

In this province, the only one that can suspend a driver’s license for medial reasons is a doctor. It’s the law. When the family speaks to a senior’s doctor regarding concerns for unsafe driving, the doctor has to put the license under medical suspension. The file then goes to Medical Review at the Ministry of Transportation. The suspended driver has to prove they are competent to drive and the process begins. They have up to 3 years to take driving test to regain their license and have to see a doctor to establish that they are healthy enough to drive. Every province and state should adopt the same rules, as we frequently travel to each others country.

If you find yourself in the position of caring for your elderly parents, get some support.

Continue on with YOUR life, do the things that make you happy. Go to the movies; enjoy watching and participating in sporting events that you love. Perhaps get counseling. I did, it really helped. It helped me deal with their aging brains and not get upset at the weird things they said to me.

Seniors don’t realize their senses have diminished; their reaction time has lessened. It’s a known fact that seniors can suffer mini strokes while driving, usually lasting for only second, but that’s all it takes – right?

Once a senior has failed a driving test, the family usually becomes unhappy because they realize now they have to drive the senior around to appointments. But as a caring society, we have to stop being selfish – we can’t have unsafe drivers on the road.

I know the Cancer Society will arrange for transportation if a person is undergoing treatment. In my town the mobile bus (for people with disabilities) will come directly to the house to pick you up if you call before and arrange a time. There are options. If you inquire you can find assistance in your town.

Also, try to pace yourself and get support, from us, from other family members, from neighbors. It will all work out and you will be blessed for your efforts.

Submitted by Carol

 

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mindful caregiving

Hurry, hurry, rush, rush seems to be the mantra of modern life. We are constantly rushing to work, to pick the kids up from school, to get dinner on the table; all with the incessant chorus of cell phones beeping and buzzing, demanding our attention. When a loved-one experiences an accident or experiences a major-medical problem, it is as if life is throwing a giant stop sign in our paths. But we don’t know how to slow down, much less stop.

Whether we are caring for an elderly parent with dementia or a spouse recovering from a heart attack, it can be hard to force our busy minds to match the new, slow pace at which our loved ones move. The endless hours spent caregiving are so easily filled with worry and rumination. The practice of mindfulness- learning to live in the moment- can help us savor our time with our loved ones. Research shows that the happiest people on Earth practice mindfulness. Luckily, you don’t have to be a Buddhist monk or buy special equipment to learn this practice. The whole point is to tune in to the here and now. The Art of Now: Six Steps to Living in the Moment by Jay Dixit describes both the benefits of mindfulness and ways to get started much better than I am able to. http://bit.ly/Zfvnc6

Early on in my career as a caregiver, I discovered that mindfulness made my shifts seem to flow by quickly. The practice helped me capture the most joyful moments with my clients. One elderly woman I cared for had such cold hands, we spent many evenings holding hands on her couch. Rather than counting the minutes as they ticked by, I learned to enjoy the moment. I studied our hands clasped together; my young, plump hand entangled with her slender fingers, decorated with a blue web of veins. I noticed her skin gradually warm up. Just as discussed in the above link, I truly savored those moments with my client. We both found such peace in each other’s company.

I believe the practice of mindfulness makes me a much better caregiver. By focusing on the here and now, I notice things such as a pin in the carpeting or a throw rug’s upturned corner that would be easily overlooked if I were mindlessly worrying about something else. Observing my surroundings helps me keep my clients out of harm’s way. Applying that same power of observation to a client helps me detect changes in their health more quickly. Observant caregivers can spot the malaise that comes before a urinary tract infection or a bout of the flu. When working with people with dementia, noticing those little warning signs that precede an outburst helps keep things from getting out of hand. Learning to live in the moment takes practice and time to master, but the rewards are well worth the effort. With time, it becomes effortless.

~Amy Kirkeide, Comfort Keepers

 

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