Caring for Alzheimer’s at Home Means Never Having an Off Moment
05.02.14

Alzheimer’s often performs the worst kind of disappearing act by stealing those we’ve loved and cared for over the years, and morphing them into people who hardly know us anymore

Alzheimer’s takes away your loved one’s memories and ability to recognize you. Worse, your loved one has trouble with spoken words, and now yells at you out of frustration and anger. And, rather than recognize you as their loving family member and friend, your loved one sometimes fears you and this fear sometimes brings on violent outbursts that you don’t see coming.

Kirsten Molvang Counselling Portrait

Perhaps most painful is the shocking sting from a hand that once held and caressed you. You do your best to help jar a memory of the two of you, so your loved one knows who you are. You express love the best you can under the difficult circumstances. You are loosing sleep because you fear your loved one will get out of bed and wander out of the house and get lost in the middle of the night. You are tired, stressed, anxious, depressed and sad. Your role in the relationship has shifted from family member to full-time caregiver, a role you were unprepared to step into.

You need help. Where do you turn?

Time Off Instead of an Off Moment

For those committed and prepared to provide the memory care needed from their loved ones, respite care can offer short-term support designed to give caregivers time to rest, recharge and feel ready to get back to caring for their loved ones. Full-time caregivers have no down time and often have little time for themselves. Respite care affords caregivers time, without the worry, to do things such as: take a hot bath, go for a walk, see a movie with a friend or have a quite, relaxing night at home.

Respite care can be utilized for one hour, one day, one week or longer depending on the needs of the caregiver and their loved one.

With respite care, caregivers can feel at ease and have peace of mind that their loved ones are receiving the best care from qualified staff, who are trained specifically in dementia care.

“When you have someone in your home with dementia, you can never have an off moment,” said Ann Reynolds, executive director at Cedarhurst of Edwardsville.

The problem is often internal, as family caregivers feel protective of their loved ones and believe nobody can offer care like they can.

“It is hard to get caregivers to ask for help, because they feel they should be doing everything. Asking for help is letting their family down or failing,” said Reynolds, “caregivers often feel selfish for wanting time away from caregiving.”

The blind spot caregivers often suffer from prevents them from realizing that respite care enables the caregiver and their loved one to find balance, rest and joy in the middle of all of the chaos.

“Your loved one can participate in activities designed to match personal abilities and needs. They get to be around other people, which is really good for them,” said Reynolds.

It is also important for caregivers to remember all behaviors are communications. For example, if all of the sudden someone you love is angry, mean and hitting you and that never happened before, it could make you feel sad, stressed and angry. It is sometimes hard to create a happy environment, when you feel sad and hurt. Even when you think those emotions are hidden, hurt feelings and emotions are communicated on your face.

There is no cure for Alzheimer’s disease, but that doesn’t mean someone with Alzheimer’s can’t have a really joyful day. With all of the things caregivers go through and with the sadness they feel, it is really hard for them to be joyful. In a professional memory care environment, when someone with Alzheimer’s is anxious, it is much easier for the staff to take a step back and assess the situation to determine what is making that person anxious.

“It can seem strange that I can say we can take better care of your loved one, but we can, because we are not sad, grieving and have not lost our best friend. Really they have lost their loved ones, but their loved ones are still living. It is a difficult situation,” said Reynolds.

“Caregivers get tired, because they hear the same stories, the same questions and get the same demands over and over and over again. Caregivers can hand it over to us. We will never love your your family member more than you do, but when it comes to redirecting and creating moments of joy for them, we do it better. That is what our job is and we do it best,” said Reynolds.

Respite Care Can Support the Grieving Process

When Alzheimer’s hits it dramatically changes everyday life, and caregivers begin to feel they’ve really lost their loved one who is still alive. It’s a very different grieving process. So, time away from caregiving lets them go to a support group or go have some fun. It’s a good break from caregiving.

It is not only the caregiver who benefits from respite care, the recipient of the care benefits in a  number ways, but being around people who are joyful makes a big difference in the loved one’s ability to feel positive and joyful.

People with Alzheimer’s and other dementias benefit by getting out of the house and being around other people who are joyful, Another benefit to the recipient is being around activities and getting outside.

“It is so rewarding to be here and be able to see those families who come to me crying and feeling sad and guilty and to watch them and their loved one smile more and feel better. It is just so neat to be their partner in taking care of their loved one,” said Reynolds.

Getting the Facts

The memory care model at Cedarhurst of Edwardsville is person centered and is the same model for respite care recipients as is for year round residents. All care plans are centered around each person’s individual needs.

A life story is collected, which includes, food and activities preferences, medical information, emergency contacts, correct diagnosis, allergies, things the individual needs help with, such as dressing and bathroom needs.

“We will take their loved one’s medical history, so we know how to take care of them medically. We also take their life story, so we know what they were when they grew up, their likes and profession. So, anything that happens, we know how to respond to their loved one, just like they do, maybe even better,” said Reynolds.

Reynolds gave an example of someone with Alzheimer’s who was a nurse earlier in life.

“We giver her a clipboard and let her do quick rounds with our nurse,” said Reynolds.

Redirection is Key

The staff at Cedarhurst of Edwardsville encourage caregivers to meet their loved ones where they are. This helps to keep anxiety and frustration levels lower. Redirection is often the the key focus.

Reynolds gave a few examples of how Cedarhurst uses redirection.

For example, if your loved one says he wants to fish, rather than say to him, ‘You can’t fish any more.’  the Cedarhurst staff will take him outside, let him sit in a chair and put a fishing pole in his hand or they might just talk to him about what he likes to use for bait. Rather than focus on the memory loss, they focus on how to engage his inner spirit to make things happy for him.

Another example, let’s say Joe was a mechanic and you find him under the bed. Rather than demand that he gets out from under there, you might ask, ‘What are you finding down there?’ and wait for his response. He may say he found a tie rod. You respond, ‘Ok, when you are done, can you come out for lunch?’ Gentle redirection gets the desired action and he knows he is safe and loved. If you argue with him or demand that he come out, you will have a fight on your hands.

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