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Understanding Dementia 2: Giving Care To The Caregiver

If you haven’t been here on “Wellness Wednesday” with us the last two weeks, I want to catch you up on what’s happened, because if you have a family member or loved one at any stage of dementia (or you want to do what you can to prevent it in your own life), I believe it will be enormously helpful for you.

Quick Recap

Two weeks ago, I shared some specific action steps you can take to strengthen your brain and prevent the cellular deterioration that leads to dementia. A few days later, I had an enlightening call with a dementia expert, who confirmed what we shared in that first article and gave me a treasure trove of additional information from her first-hand experience. I shared part of that conversation last week. We talked about the unique health challenges that dementia patients suffer and how different types of geriatric nurses are trained specifically to serve those needs.

Our expert, Haely Ordoyne, grew up in the healthcare world. Her mother was a nurse at a hospital with an attached long-term care unit. She has been a case manager specializing in seniors and patients with developmental disabilities. After she married, she and her husband purchased a nursing home in Kansas. She has served as the social worker and, since 2010, the administrator of that home. Her expertise is in regulatory compliance for long-term care, Medicaid, and the VA. She is a member of the Kansas Adult Care Executive, and she advocates for senior issues at the State Capitol.

Dementia Affects the Caregiver

I’ve received really good feedback from our readers about this series. I get the sense that this is an important issue for a lot of people — everyone seems to know someone who is suffering the effects of dementia at some level. The more we can educate people about the resources that are available to help them navigate dementia, the better.

But here’s an important thing to consider: dementia doesn’t only affect the patient, it also changes the caregiver’s life in a dramatic way. It’s ways to forget, but caring for the caregiver is just as important as caring for the patient.

So let’s pick up the other part of my conversation with Haely.

When you are caring for a dementia patient, you are also dealing with a caregiver. What are the unique needs of the caregiver?

They lose their normals. Everything they knew about their lives is replaced with a new set of realities. As a spouse or an adult child takes on the caregiver role, they have to shift their expectations of what the patient can do for them.

If you have always looked to your mom for advice and conversation, you will find that she isn’t able to provide that for you as much, if at all. I’ve seen some really big men – [one, in particular, I can think of was] a 6-foot-7 gentle giant – get physical, where he hadn’t previously been that way. That can be traumatic for a caregiving wife.

What kind of guidance do you give to caregivers?

One of the first things I tell caregivers is that they need to accept the diagnosis. Denial will ruin you. It makes you unable to cope with change as it comes, and it prevents you from proactively making the kinds of care choices that will serve you both in the long run. The sooner you embrace the new reality of your situation, the sooner you can take appropriate action.

There are many educational resources for dementia patients and their caregivers. In fact, there may be too many, and it’s easy for caregivers to get overwhelmed with all the options. You might not know where to begin. The Alzheimer’s Association is great. There are a ton of online resources, but they do a great job of helping you to navigate through what you need to know. It’s also helpful to familiarize yourself with local community resources. Nearly every town has someone who can answer questions. Visit the local nursing homes and ask them questions. You would be amazed at what they know, who they know, and what they are willing to share with people.

What about the rest of us? When we know someone caring for a dementia patient, what can we do to support them?

This is so important, and I’m so glad you asked.

Give them a way to take a break from time to time. Caring for a dementia patient is a 24/7 deal. They never get to take their mind off the other person and their needs, especially as they continue to decline. I relate it to raising a toddler – you can’t take your mind off them for a minute.

Sometimes, all the caregiver needs is time to take a bath or a shower without worrying about their spouse. Just a chance to go to the grocery store and know that the patient is cared for.

Get the kids involved. Typically, dementia patients have grown kids that can step in and help. If the kids live close enough, they can commit to at least one time a month to come home and take care of mom for a day, so dad can get a chance to relax. It can be all-consuming. Find a neighbor or a friend who can partner with you — someone you trust, who has your back. Let that person be someone you can talk to, who can give you time away from the house.

The caregiver also needs to be able to ask for help. Self-care is really important. Call on the church community for support – both emotional support and resources. Sometimes, we all just need someone to talk to. Your spouse, who has been your best friend for 40 or 50 or 60 years, all of sudden, can’t fill that need anymore. You can’t talk to them the same way. They may not recognize you or understand what you’re talking about — even things about themselves. That can be heartbreaking for a spouse.

Do you find that husbands have a harder time with taking care of a wife with dementia than wives have with taking care of a husband with dementia?

Overall, I’d say wives tend to be better caregivers, because they typically have more experience, having raised kids. Husbands often don’t know what to do. But in a way, that can be a good thing, because they are more prone to reach out for help sooner, whereas wives tend to think they can handle it. They raised kids, so this is just another stage of caregiving. But that can also make them reluctant to ask for help. It’s important for daughters and daughters-in-law to step in and provide that support to care for the mom as she cares for the dad.

I find that, by the time men with dementia come to us, they are further along in their progression than the women are, and typically, it’s because the wives think they can handle it. Often, husbands recognize early on that they are not equipped to care for a dementia patient, so they bring them to us to provide the 24-hour care. But they visit every day. I see the most amazing love stories with some of these couples. I love the husbands who come over every day and spend the day – or even just a few hours – with their wives. There is such devotion in that.

Are there times when the spouse doesn’t come to visit anymore?

Yes. There often comes a point where the patient doesn’t recognize the spouse anymore. Some spouses just can’t handle that. To have someone you cared for so deeply for so long, and suddenly, they don’t know who you are anymore. It’s heartbreaking, but it happens. Some can’t stand to see their loved one so incapacitated. Some just move on with their lives.

We’ve all heard the horror stories in the news of nursing home abuse and neglect. What can caregivers do to ensure that their loved one is well-cared-for?

It’s true. There are problems out there. But in any industry, you always have the one-in-a-million horror stories that get all the attention. Some places just aren’t run right. Some places have good hearts and lousy business skills. There are places where the staff and administrators treat it as a business transaction – they care about the dollar, not the person. I get that. I’ve seen it. Fortunately, it is the exception, not anywhere near the rule. The homes I know are run by professionals who care.

Of course, turnover is a major problem for a lot of facilities, because the skill training is so specialized and the staff builds relationships with the residents. But the truth is, it’s hard work. I find that locally-owned or independent facilities tend to have higher retention than corporate-run facilities. There are some amazing corporate groups, but they don’t always have the personal touch for the staff and administrators that a locally-owned home can offer.

And there are homes that are spread so thin, due to high turnover and not having enough qualified people in the area, that they just hire anyone off the street. You get what you get when you do that. It’s hard, but [like I talked about last week], geriatric nursing is very specialized, very trained, and it’s important to have good people on your team.

What contributes to the burnout and turnover?

The fact is, geriatric care is a 24/7 operation. There’s no downtime, even at night. Patients have needs every minute of every day. My team knows they can’t just not show up for work. Everyone on the team counts on everyone else to play their part. I understand if you have to take time off for an appointment or something, but you can’t ever just let your team down.

It’s a high-stress, high-emotional demand profession, and naturally, there is a high rate of burnout and turnover. It takes enormous emotional intelligence to be able to process the unrelenting demands of the job, the grieving process, and emotional attachments. That makes it difficult to find and retain the best people. Even really solid people can get burned out in this environment. That’s why I work really hard to love our staff, to take care of them, and to give them room to breathe when they need it.

I just happen to have some of the best people anywhere. I’m so proud of my team and everything they do, day in and day out, for our patients.

What are the questions people should be asking when evaluating nursing homes?

When you are looking for a home to place your loved one, there are things you can do and questions you can ask to ensure that you are getting your parent the best care available:

  • Walk through an environmental check of the facility. Does it feel like home, where your loved one will be cared for? Your gut instincts don’t lie.
  • Ask the other residents what they think.
  • Ask the staff for references – remember, you are basically interviewing someone to take care of your loved one(s) full time.
  • Every facility is supposed to have an annual inspection, either from the state or federal government; ask for survey results
  • At the same time, remember that sometimes, depending on the inspector, a “deficiency” report can be something as simple as a form turned in a day or two late.
  • Look for mistreatment among the residents. Question if you see something that doesn’t look right. Ask your parents’ physicians and pharmacists if they are aware of mistreatment.
  • Ask what their philosophy of care is. Every home has one and it should dictate their caregiving decisions.
  • Ask the staff why they come to work every day.
  • Talk to the staff about what they love or hate about their job.
  • Ask how long they have been there – longevity is a pretty good clue of what it’s like to work there.
  • If your loved one has specific health care needs, ask how they would care for those needs.

What You Can Do

I’m so grateful for Haley’s willingness to share her expertise with us about this important topic. In closing, I want to throw out some action steps gleaned from our call that you can take if you recognize the signs of dementia in a loved one. Whether you are the direct caregiver or your parent is, let this serve as a simple checklist for preparing for the new season of your lives:

Ask For Help

Build a network of family and friends you can count on to help you care for your loved one. As this epidemic grows, more and more people are going to have someone in their lives with dementia — and at younger and younger ages. We need to have each others’ backs and help each other navigate this major life transition smoothly.

Make Self-care A Priority

It’s easy to get wrapped up in caring for your loved one, just like it was easy to get all-consumed with raising your children. But hopefully, you learned the first time that it’s just like the airline flight attendant says, “secure your own mask before assisting others.” Surround yourself with people you can talk to and people who can give you some time away. Make yourself stop to read, to pray, to be out in the community.

Get The (Grown) Kids Involved

I hear people say all the time that they don’t want to burden their kids with this kind of thing, but your grown kids are just as responsible for caring for you and your spouse in your golden years as you are.

Visit www.alz.org – the Alzheimer’s Association Website.

It’s a powerful and rich resource that goes much deeper than we can go here.

Get to Know People At Your Local Senior Center or Nursing Homes

They can help you to decide what information you need, what action steps to take for your loved one, what your legal rights and responsibilities are, and when it’s time to move your loved one to assisted living.

Don’t Go Through It Alone

I know I’ve said it several times in different ways, but I can’t stress it enough. It’s tempting to buckle down and try to do it all yourself, but you could end up hurting yourself and your loved one. You need to replenish yourself physically, emotionally, mentally, spiritually, socially, and maybe financially. Surround yourself with people who love you and professionals like Haely, who know what to do.

Who Do You Know That Needs This?

I hope this article series has been helpful, but also that it has been encouraging. You don’t have to be anxious or afraid. You can keep your joy and your faith, and walk through this season with grace. If you’ve learned anything from these articles, or just been encouraged, please take a few seconds right now to share it on your favorite social media channel. You never know who else is looking for this information.

“At the end of your FEELINGS is NOTHING. At the end of your PRINCIPLES is a PROMISE.” — Eric Thomas

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