Should Mom Be Living Alone?

Recently I received a call from Michelle, an exasperated adult daughter asking if there was any legal way to get her elderly father to stop verbally abusing her and to accept a caregiver so she could move out of his house. She had moved in to help him after her mom passed, but was now trapped as he refused to move to assisted living or accept live-in help.  Michelle started to cry, saying she had just called an agency where a man "laughed at me," saying her father could do whatever he wished in his own home short of physically abusing her. Since I have survived the same situation with my own father, I knew the misery she was going through.

 It reminded me of a call I received from another adult child, Paul, begging for my advice on the same situation. He was at the hospital with his parents. His elderly father had accidentally burned the house down. He'd tried for years to convince them to move to assisted living or accept a caregiver, and a couple times even had everything lined up, but they'd cancel at the last minute. I felt so bad for him and suggested it might be best to wait until his parents recovered from the smoke inhalation before trying again. But Paul (a successful 60-year old businessman) burst into tears with, "I can't wait! My father already hired the contractor to rebuild the house. Jacqueline, my parents are 90 and 92!"I wish I had the iron-clad solution to this problem to help so many people. Since our civil rights are (fortunately) very strong in the United States, unless an individual is legally proven incompetent (a difficult process, but especially hard at the beginning stages of dementia), they cannot be forced to do/not do anything against their will – unless, of course, it's something illegal.  The best way to increase the odds of a parent accepting help later in life is by starting end-of-life conversations early, and long before health and rational thinking start to deteriorate. When a parent's "Third Act" wishes have been discussed openly for years (and documented with living wills, trusts, durable powers of attorney for Health and Financial, etc.), when the time comes, the transition is less traumatic.  The problem is that so many people never get up the nerve to broach such a sensitive subject, or every time they try, the parent gets mad, goes into denial, makes silly "senior moment" jokes, and nothing ever gets resolved. If this sounds like your situation and you've been procrastinating and avoiding "The Conversation," realize that when your parent does reach the crisis point and you have to step in, you have a lot of "convincing time" ahead of you.

Will Your Elderly Parents Be Safe Living Alone?Take a moment and remember when you were the child. Wouldn't your parent have done everything in their power to keep you safe, no matter how much you protested? Now, as hard as it is, you have to accept the role reversal and be the responsible "parent" who persists in making sure your parent is safe. And yes, even for those who have not been great parents, do the right thing and plan for good karma!   When you know in your heart that your parent cannot remain safely in their home any longer, don't let demands and pleas cloud your better judgment. You know what they need, so don't end up a sad statistic by waiting for the heart-breaking middle-of-the-night crisis call about a broken hip, medicine overdose, stroke, or horrific car accident where they have been hurt or even killed, or some poor innocent family has been--and a lawsuit is certain.  Reach for Support ASAPBe sure to ask all the relatives, friends, clergy, healthcare professionals/ doctors to back up your specific plans by calling or coming in-person to see your parent to add words of encouragement and support. You might even ask everyone to visit at the same time to help with an intervention of sorts, where hopefully your parent finally understands the seriousness of the situation and "sees the light."
Finally, realize that nearly everyone who has ever lived since the beginning of time, who has been lucky enough to have their elders reach old age, has experienced the pain of watching their once-competent parents decline, need help, and pass away. We all intellectually know it is a sad part of life, but even with all that's been written and with all we have seen, there's nothing that prepares us for the sorrow when it is our loved one. Take advice from all who have gone before you--don't even consider going through it alone.

  Dementia Signage for the Home

Weekly Planner (Bright Pink) Memo Pad

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Weekly To Do List Notepad (White)

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EZ-C Bold Yellow Weekly To Do List Notepad

Red Dry Erase Board

Dementia Signage for the Home

Dementia Caregiving Support Groups

It depends on the purpose of the group.

Do you want to attend a caregiver group, start a new support group, or are you a professional referring a client to a support group?

There are three kinds of dementia support groups.

Each of the three is reviewed below concluding with a brief discussion of additional considerations.

1. Caregiver support group

A support group for caregivers caring for people with dementia is a place to share information. Members representing the entire range of care (early to late dementia) share their experiences, ask questions, and help one another learn what to expect during the course of the disease. Ideally, it’s a place to feel supported and have hope–a place where tears are dried with laughter.

CAUTION: If a caregiver needs to bring a loved one to support group, caregivers will feel uncomfortable sharing their experiences candidly. Although the loved one may appear not to understand, s/he does comprehend at an emotional level, which will have long-term consequences (e.g., trust issues, fear).

2. People with dementia

People living with dementia gather to discuss issues such as their level of independence, abilities, emotions, and how they are stigmatized in society.

Those whose abilities are remarkably intact may drive to the support group location.
Others’ whose abilities are increasingly threatened by the onslaught of dementia’s destruction, may meet at a support group during the same time but a different location than the place their caregivers meet.

Memory Cafes gained traction in the U.K. as a place where people with dementia gather and feel normal again. They made their debut in the U.S. almost a decade later. For more information, visit Memory Cafe Catalyst.

3. Hybrid blend of carers and people with dementia

These are hybrid support groups of caregivers and people with dementia who gather at a restaurant, coffee house, or even someone’s home. Their purpose is more social and light-hearted.

While caring for my father, and feeling distanced from non-caregiving families who truly had little understanding or appreciation for the life of a caregiver, my husband and I strengthened our ties with fellow caregivers by inviting them to our home for the holidays. Early on and before most of our loved ones needed skilled nursing care, caregivers and our family members living with dementia celebrated special occasions together.

Sharing time together with people who share a similar experience–particularly, caring for a loved one with dementia–reduces a remarkable amount of stress, while making each feel stronger.

Additional considerations

Additional considerations of support groups include support groups for men and virtual support groups.

Support groups for men

Gene Conrad has lead the charge in advocating for support groups for men. Read Dr. Conrad’s article here explaining how a support group for men is structured while answering a common concern men are afraid to bring up in a group with women.

Virtual support groups

Virtual support groups are growing online but many still occur by phone.
Whether you chat online by video using devices such as Skype or Google Hangouts, or use the many online forums such as Caring.com Ask the Expert or online support groups, there are many options available to you to connect with others.

You can meet the old-fashioned way–by phone. Teleconferencing programs are available–some are free such as FreeConferenceCall.com.

When forming a support group whether in-person, online, or by phone, attendees should decide together what purpose it will serve–for caregivers only, for people with dementia, or a hybrid group (combination of the two).

Dementia Signage for the Home

Sleep Journal

Calendar Appointment Reminder Stickers (Red)

Medication Log Notepad (Sky Blue)

AA Fellowship Cards Business Card Templates

Daily Pain Journal (Sky Blue) Memo Notepad

Daily Fatigue Journal (Sky)

Preparing Early For Caregiving

Caregivers who prepare now will feel peace while caregiving.

Guest post by Shanon Raynard

As a caregiver, you are well acquainted with what it’s like to feel overwhelmed.

Every day promises to bring new challenges to the fore. It is perfectly natural to struggle with achieving a balance between caring for your loved one and yourself. This balancing act is an important one; the more centered and clearheaded you are the better care you will be able to provide.

Many caregivers make the innocent mistake of dealing with difficult situations as they arise, day by day.

It’s true that there will always be things you cannot prepare for that come up suddenly. Preparation, however, is an underutilized stress-management tool. Knowing that you are equipped with the knowledge and skills to cope with and respond to potential trials and tribulations frees up a certain amount of emotional and psychological energy that can then be directed to what matters most, your loved one.

How do you prepare?

Just as every patient is unique, so too are the complications most likely to affect each one. When it comes to caregiving, knowledge is power. And power provides peace of mind. It’s critical that you learn as much as possible about your loved one’s medical condition, medications, and alternative treatments that may be worth pursuing. Investing time in researching the normal progression of his/her ailments will prevent panic while navigating circumstances you know nothing about.

Keep track of your loved one’s important documents. Know where to find his/her medical records, contact information for doctors and other family members as well as a current list of financial accounts, end-of-life wishes, and any legal affairs.

If this sounds like a lot to keep track of — it is — there are a number of tools available. Forget pen and paper lists, apps are designed to manage large stores of information. Microsoft HealthVault is just one such app. There are plenty of others designed to keep track of medications, dosing schedules, and potential drug interactions.

As your loved one ages, familiarize yourself with common cardiovascular conditions that may lie down the road. Stroke, heart attack, atrial fibrillation, and cardiac arrest each require different interventions. First aid/CPR certification, as well as Basic Life Support (BLS) or Advanced Cardiac Life Support (ACLS) courses, can teach you what to do in the event of these medical emergencies. Knowing how to respond quickly and appropriately improves your loved one’s prognosis and can put your mind at ease.

Preparing for the future will help you feel calm now. When you’re not in a constant state of worry, you’ll have more time, energy, and peace of mind to focus on the balance of taking care of your loved one and yourself at the same time.

Shanon Raynard believes prevention and preparedness are the most important elements of health and wellness. She partners with ACLS.net to raise awareness about life support certification resources that follow the latest guidelines from the American Heart Association.

Dementia Signage for the Home

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Medication Reminder Notepads

Patient Excuse Form Notepad (White)

Privacy Patient Sign In Slips Notepad (Purple)

Medication Refill Reminder Notepad - Light Blue

Manual Prescription Pad (Large - White) Note Pads

Manual Prescription Pad (Large - Blue) Memo Notepad

Manual Prescription Notepads (White)

Certify of Professional Care Notepad (Sky Blue)

Certificate of Health Notepad (Canary Yellow)

Medication Log Notepad (Sky Blue)

Doctor's Appointment Reminder Notes Notepad

Doctor's Appointment Reminder Notepad

Red Prescription Bottle Refill Date Sticker

Appointment Reminder Notepad - Red w/Black Text

Medication Reminder Notepads

Red Toiletry Labels for

Dementia: A Brain Made of Swiss Cheese

What a terrible condition dementia is.

It takes the brain of a bright, loving, proud, communicative – add your own adjectives – individual and turns him or her into an infant. The fog that gradually moves into the mind like fog pouring into the countryside after a rain storm, fills the brain with mush that can no longer make sense out of the simplest of jobs.

Charlie took his ATV out one day and drove onto his hillside to enjoy the early fall scenery and came back a different man.

I hadn't noticed any symptoms prior to that afternoon, nor had he complained of any mental problems up until that day. Turns out, he had suffered a mild stroke that sent him on a slowly spiraling down draft to vagueness.

As he drove the hillside on his well-marked trails, he suddenly became confused and didn't know how to get back home. He sat shaken, in one spot, until the fog in his head began to lift, then drove back to the house.

It would be two days before he gathered his composure over the event to the point where he could mention the problem to me.

Following a series of cognitive tests and a CAT scan doctors confirmed the diagnosis of stroke-induced dementia. Apparently he had previously suffered several smaller such events, without realizing what was going on.

Had either of us been observing his actions carefully, we might have realized earlier that something was not right. But people with early dementia can be very astute at covering up the symptoms, until it is no longer possible.

It soon became evident that this Mr. Fix-It, fighter pilot, previously brilliant man was declining into someone who was ultimately going to depend on me for everything.

Several small ischemic attacks have occurred since that first noticeable episode. Each one has taken its toll. He is no longer able to drive – his skills seem to be okay, but his sense of direction is lost forever. I don't trust him to drive, even with me navigating, because I'm afraid he won't remember where to find the brake pedal or that a red light means stop.

Charlie now gets lost in the grocery store so he waits in the car for me to do the shopping. One day I asked him to put something on the washer, and his response was, "Where's the washer?" although he walks by it several times a day.

I have to leave him alone on occasion to go to appointments or some other event. I carefully tell him where I am going and what time I will be back. By the time I get home he is sometimes in a panic because he didn't know where I was and he worried that something had happened to me.

I recently arranged for a Medic-Alert system to be installed in the home. But I am quite certain that if he should fall while I am away he won't remember to push the button to call for help. This means we are rapidly approaching the point where I'll have to get someone to stay with him if I have to go out for a short period.

Yet they tell me he's still in the early stages of dementia.

He still recognizes me, and other family members; he may not recall their names, but the faces are still familiar. He has forgotten that his sister died; he never mentions his brothers who live away from us, although they were always very close. When they call to talk to him, it's like he is talking to strangers. He has nothing to say to them and hands the phone over to me.

It's sad and frustrating to watch the brain turn to Swiss cheese, letting all the things learned over a lifetime slowly fall through the holes. But that's the way with dementia.

We learn to live with it and cope the best we can.

Dementia Signage for the Home

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Weekly Planner (Bright Pink) Memo Pad

$30.95

Weekly To Do List Notepad (White)

$30.95

EZ-C Bold Yellow Weekly To Do List Notepad

______________________________

Dementia Signage for the Home

$22.75 - Financial Records Organizer Vinyl Binder

$22.75 - EZ-C Bright Green 3 Ring Binder