While caring for our Mama when she had dementia, it didn’t take too long to realize that sleeping through the night was becoming a faint memory. Mama tended to get up several times each night to use the restroom, and my husband and I took turns getting up with her to ensure she didn’t get lost in the process.
A bell we hung on her door jangled each time it was opened to alert us. It wasn’t too loud, but Mama’s room was close enough to ours so one of us could hear it.
After a while, the lack of sleep began to take its toll on us. We discovered a small care home that would take in temporary clients so we could get a night or two of uninterrupted sleep and be ready to welcome Mama back. Our experience with respite care made a world of difference.
The need for respite may be in your future
One of the reasons I thought now would be a good time to address this topic, is that I’ve been seeing several articles that warn about the increasing likelihood of folks becoming caregivers. One from the CDC, states that almost ¼ of the US population (24.4%) of adults aged 45 to 64 years are caregivers. Remember the famous saying by Rosalyn Carter:
“I like to say that there are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need caregivers.”
—Rosalyn Carter, former First Lady of the United States
Why do we need respite care?
The goal of respite care is to provide assistance and relief to those caring for their loved ones. As caregivers, we cannot predict the length of our loved ones’ journey. Though we intend to finish well, there will be times that our hands will sag, our eyes will droop, and our souls will sigh. We will grow weary, become exhausted, and frustrated with the whole situation.
For us, the number one reason we needed respite care was so we could have a full night’s sleep. No one is a superhero. You need to accept that you are not the only one able to care for your loved one. Finding respite care offers caregivers a guilt-free break by providing a breather – which helps relieve stress, in turn offering a mental health break.
Another benefit of respite is that it provides a caregiver with the ability to socialize more often – improving our emotional health. Becoming socially isolated is a major risk factor for developing dementia.
Our physical health may also benefit from the ability to both make and keep doctor appointments, as well as have more opportunities to exercise.
Studies about respite care
I did not find many helpful studies regarding the benefits or drawbacks of respite care. I believe the reason is that respite care involves a person and their loved one – which is a very personal situation. Because of that, limitations exist in conducting a scientific study.
I did come across a study that explained the limitations. The results are reported in part: “Although randomized control trials are possible in community settings, validity is compromised by practical limitations of randomization and other problems”.
Where do you find respite care?
Someone asked me the other day how to find a person or company that provides respite care (or Daycare for Seniors). I’ve found that word of mouth regarding respite services is a good way to learn about whats out there, and what helped others in their journey and why. Folks are often happy to share stories about their respite care experience. It is probably safe to rely on reports from caregivers you know and trust who have used respite care and found a measure of rest and relief.
Of course, a personal recommendation is best. So ask your friends and family if they know of, or have heard about, any good places or people. Another option that is a benefit of technology is that you can Google ‘respite care near me’. In either case, you will have to meet with the potential respite provider for yourself to determine if they will be a good fit for you and your loved one.
What to look for in respite care
- Observe some interaction between your loved one and the potential respite provider. Watch to see if they have a kind demeanor, and are respectful and patient when interacting with your loved one.
- Are they experienced and can they provide references?
- Do they have the skills needed, and are they willing to follow your directions and guidelines?
- Ask how they would respond to various emergency scenarios.
- A note about medications: most places can give required pills at the appointed times, but if your loved one needs more than that (insulin injections, for example) make sure the person or place can provide that type of care as well.
Respite is needed more than ever
Ominous warnings from reputable sources are showing up in more articles and studies. PubMed published a study that found “Eighteen percent of spouse ADRD (Alzheimer’s disease or related dementia) caregivers died before their care recipients, and spouse caregivers had a significantly lower risk of mortality than their husbands or wives with ADRD.”. The percentages vary in other studies – one as high as 70%.
This is a valid issue. You may not be willing to take care of yourself – for yourself – but if not caring for yourself means you will be unable to care for your loved one, then are you willing to do it for their sake?
Caregiving requires a lot from the person providing the care. It was not until after Mama began to live permanently in a care home that I realized how much time and energy her care required. It isn’t easy to recognize when you are in the middle of it. I even gained a few pounds after caregiving because I wasn’t jumping up every few minutes to do this or that in the course of taking care of Mama.
You may find yourself in the same boat. Giving yourself tirelessly does not benefit either of you in the long run – and it can be a long run. There are so many caring, compassionate, and valuable services you do for the one you love. Respite care is something you do for you.
Has your world been touched by dementia?
My book, “Finishing Well: Finding the Joy in Dementia“, is a collection of stories and tips about doing life with my Mama. May it encourage and inspire you to find joy on your own, unique journey.