Health

Life after the Alzheimer’s diagnosis; Where do you start?

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For the last six years, I’ve made my living caring for the disabled and elderly in their homes. However, I don’t clock out when I go home. I have a severely disabled child, so I know the strain of caregiving on a very personal level.

Photo by Katarzyna Grabowska on Unsplash

This is hard to accept if you have a loved one who has been diagnosed with any form of dementia, but things are not as they have been. Alzheimer’s, in particular, is a degenerative disorder that won’t get better, but what’s so hard to accept for family members is the fact that their loved one will slowly lose those parts of themselves that made them who they are.

Photo by Clem Onojeghuo on Unsplash

There are ways to preserve those interests for them as they lose everything else. Memory boxes are a great way that works at every stage of the disease. I suggest making the exterior of the box reflect the content in case you wanted to have multiple boxes for your loved one. You can find some excellent home decor boxes in almost every major box store.

Say your loved one loved gardening, but she can’t do it anymore. The items I would choose in that case would be soft faux flowers, gardening gloves, pretty figurines of garden scenes or items, and I would, of course, avoid anything that was a hazard even seed envelopes because it’s so likely your loved one might open them thinking they were getting ready to garden or curious about the object they no longer recognize. Stick with items that are obvious and will give the person you’re caring for the best memory prompt. Nothing sharp, although that probably seems obvious.

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If there’s a family member who’s being forgotten and that person took part in that activity with your loved one quite a bit, this is a great opportunity to prompt that memory and help boost your loved one’s recognition of this family member. Try placing pictures of the two of them together in the memory box, ideally something having to do with the activity.

One of the things I see go badly with all my clients is what happens when we feel the pressure to get a task done, either because we’re in a hurry or irritated and we push, push, push. This isn’t an easy job and caregivers will get antsy, but this attitude is going to make things worse. No matter how pressed for time you are, it won’t get you there faster to hurry your loved one along. They just can’t do that anymore.

Say grandma won’t take her bath. If you see she’s really agitated, move to the next thing immediately, back off and let her calm down, then try a favored activity, anything she enjoys will work even if it’s only drinking a glass of orange juice.

I’ve had success with approaching a disliked or unwanted activity in a different way. With one client, I used to say, “Well, let’s get it over with.” It helped that I knew her myself. She’d been the kind to just do a job and get it done to get it over with, but this illustrates the point. Care has to be tailored to the person as best as can be.

That wouldn’t work with another person. In fact, I could see it making them bow up and dig in. You have to know who your loved one was to know how to approach them, and, if it doesn’t work, move to the next idea.

That same person in mind, if that approach didn’t work in the morning, I’d sell the shower with her arthritis in mind. She’d hurt something fierce, and the warm shower really helped her back. So, it made the shower something pleasant to focus on her back a while with the spray. She felt better afterward, and I would argue got much happier about shower times as time went by.

You aren’t caring for a child.

This is so important to remember. They don’t regress so much as lose what they have. People with dementia of any kind still need dignity. As a caregiver, remembering that can go a long way toward making your life easier and theirs more fulfilling.

Don’t change the way you talk to them. Simply slow it down. Wait longer for answers to queries. Brain processing slows down with age anyway, but with all forms of dementia, it becomes so hard, sometimes impossible, to focus or take in new information and then retain the information you already had. I’ve found it a good strategy to stick to patterns of speech they are familiar with as you talk to them, and be patient, patient, patient.

When my father experienced stroke dementia before his death, I noticed he needed as much as a count of six after a question to answer that question, and sometimes more. If your loved one has a processing delay, it’s imperative that you build in more time for every activity. Not just to plan for potential outbursts but in order to try and avoid them as you go.

My own experience taught me something.

A few years back I was in a car accident and walked away fine with a bump on the noggin. However, as time went on that afternoon, as we towed the car and talked to the police, I started getting sick and ended up in the ER myself. I’d taken a serious knock on the head.

By the time the ambulance dropped me off, I couldn’t say words. I would look at an object, know I knew what it was, and I just couldn’t find that word. It was terrifying.

It turned out to be a hemiplegic migraine brought on by the stress of the crash or my head injury, and it was a learning experience. I was afraid, so frustrated, angry at my body for betraying me that way. I think I even remember stomping my foot at one point because I couldn’t answer the question asked. I saw a lot of my clients in myself, and I walked away from that experience a more patient and empathetic caregiver, for sure.

The experience of dementia is heartbreaking to watch and horrible to live through. As a caregiver, you have to be aware of that, and give your loved one room to be human. Some of those “bad days” are natural reactions to their disease and the emotional toll it’s taking on them as a person.

Alzheimer’s is a terminal diagnosis. The disease will progress, and it will never get better. As painful as it is, I encourage family members to research the disease and understand it. People with this disease don’t take in new information well or at all eventually. This confuses family members because they remember events from long ago longer than newly acquired information. There is a reason for that.

Long term memory is the last to go.

This is the progression of the disease. Mom can’t remember that she went to the store yesterday to buy groceries, but she knows exactly what Aunt Ida said to make her mad a decade ago. It happens.

More importantly, caregivers need to understand when it happens why it’s happening. According to the Alzheimer’s Association, “ It’s the destruction and death of nerve cells that causes memory failure, personality changes, problems carrying out daily activities and other symptoms of Alzheimer’s disease.” Those nerve cells don’t return.

In caregiving, lasting long term memory can be a curse and a blessing. It can give the caregiver something to distract their loved one with on difficult days, but it can also cause misunderstanding.

For instance, when grandma asks for grandpa who’s been gone for ten years. Please, don’t correct her. Just don’t. She doesn’t remember. It will hurt her today just as it did on the day he died. Instead, tell her he’ll be home later. He had somewhere to be. Anything else.

It’s mostly a blank.

The National Institute of Health tells us that so much is still unknown about this disease and how it does the things it does. However, new drugs are on the horizon that may delay disease progression and raise the quality of life in Alzheimer’s patients.

Learning to be a good medical advocate for your loved one is the first step to finding a treatment that will help. It’s always a good idea to have a book, a medical history of the disease since diagnosis, a place to take notes, and contact numbers for professionals you need.

Taking notes is probably the smartest move you can make. Diagnosis is difficult and families can become overwhelmed by the situation, missing key information in the doctor’s office. If you’re having trouble, find a support person to bring with you. A second set of ears and eyes to gather all the useful data for later is a good thing to have along.

Coping as a caregiver

I know this is easier said than done, but caregivers need breaks. They need distance sometimes, too. Reach out to your community’s experts on aging and disability to see what programs are available to you to help you balance the load.

And, cut yourself some slack, please. This is a marathon, not a sprint. You’re going to be doing this for some time to come, and you have room for mistakes. No one is perfect, and caregiving is not easy. Be as kind to yourself as you can.

There are plenty of sources for caregivers to find help. One such is the Alzheimer’s Association. They have information, not only on the disease but also on the care of those with the disease. You can ask about local resources at your county health department or at the local hospital. Whatever comes next, never be afraid to reach out for help.

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