Respite Care – Caregivers taking care of themselves

The term used for caregiver rest, or a short break for relief, is respite care. Respite could be a short period every day where you get out to a favorite activity, to do errands or simply relax.  Or, it could be a week more break while you go on vacation or attend a family event.  It could even be having someone to help you during the most challenging hours of care, to support each other and more easily handle your loved one’s needs (and restlessness, agitation, redirection, responding to fears/concerns).

What are potential sources of Respite Care?

  • Family, friends, church and other social groups are often the first line of defense.  Can your sister come to stay with Mom while you go away?  Can friends help you run errands or sit with your loved one while you have an appointment?
  • Hired home caregivers (home health agencies for example) can come in for short-term assistance or on a regular basis.
  • Assisted care facilitiess often offer respite care, in which a person can be temporarily admitted.  Some also offer day programs, where a person can attend without residing there.
  • Adult day programs often offer different hours of attendance, so for example, your loved one could attend in the afternoons or mornings while you attend to other activities.
  • For respite care costs (i.e. all the other options here besides the first), contact your local Area Agency on Aging or Alzheimer’s Association about financial assistance.  There is some limited funding for short-term caregiver respite for which you might qualify.  Read more about Respite Senior Care Costs for various options.

The biggest question or concern for a Sundowners caregiver is “How will my loved one react?” or “How can someone else handle the situation?” when you know your loved one requires special care and attention.  This is a very valid concern.  Transitions and changes are difficult for any person with dementia and especially concerning when your loved one sundowns.  It is important to evaluate which options will provide the least disruption and be best for your loved one.  Equally important will be preparing “substitute” caregivers to be better enabled to handle the situation.

Here are a couple tips:

  • Evaluate what setting/option might work best for your loved one.  A familiar family member or friend in the normal setting may be least disrupting.  However, it can quickly fall apart if that person is not used to the situation or trained in working with someone with Sundowners.  Maybe respite care during the hours when your loved one is most calm (i.e. adult day care or hired caregiver in the morning) would provide you a break, while allowing you to be there when you feel you can best handle the more challenging times.
  • Ensure any providers you are considering (home health agency, assisted living) have extensive experience working with individuals with dementia and have knowledge of Sundowners Syndrome.  Ask them how they would deal with your loved one’s behaviors and what type of training and experience their caregivers have in this area.
  • Provide “substitute caregivers” with background information and tips that will help them in caring.  For example, what tends to bother your loved one, what is the normal routine, what helps to calm him/her down or provides reassurance or distraction?  What are some topics of conversation or activities that he/she enjoys?  Paint a picture of a typical day as well as some of the more sporadic behaviors or occasional issues that arise.  You can get more tips for Alzheimer’s caregivers preparing for alternate care options and a Checklist of Items to Consider to Better Prepare Substitute Caregivers.

Have you had an experience with respite care?  Successful or otherwise?

What is your biggest concern about respite care for your loved one with Sundowners?

3 replies on “Respite Care – Caregivers taking care of themselves”

I am the only caregiver for my 67 year old father with Sundowners. I get little to no rest most of the time. There are days that I feel that I cant go another minute. I stay tired all the time and my health is begining to suffer due to this. What can I do to help my father and myself in this situtation? I have two other sibilings who refuse to help because they want him to be put away in a nursing home, which I refuse to do. I lost my mother 2 years ago to breast cancer and I also moved her in with me and took care of her alone up until her death. I do not believe in throwing a family member away just because they are sick. My parents would have taken care of me if the tables would have been turned. Any advice you could give in this matter would be greatly apperciated. Thank You

Oh my, how I know what you’re going through. My 61 year old husband has Parkinson’s and Sundowners. My mother was with us for a year and a half before she passed away in June. I, many times, thought I couldn’t go another day. I hate to ask for help and there has not been many family members who have assisted me in some way. I too, refused to put Mom in a nursing home and she passed from cancer in her own home with the help of Hospice but I never left her side. I had my husband with me, too. I am a very caring person and wonder why this has happened to me. I know I need to seek some sort of treatment for myself. I still don’t know what to do and I’m still very depressed with seeing my husband battle dementia and mourning my mom. I ask God for help every day. These things have changed the person I used to be. You are not alone and I pray for peace in your life.

I am now in the 7th year of caring for my mother. Among the many health issues that have left her bed/wheelchair bound, she has begun having Sundowners. I found this out only after a little chat with my pharmacist last night. And now it’s all beginning to make sense.

The very worst thing you can do is neglect yourself. And yes, I know that is easier said than done. The main advice I can give… Coordinate with yours and your loved ones doctors. Get the respite time you need.

It took having a complete nervous breakdown last year, for me to learn this. The family had to step up and step in for a bit while I was in the hospital. And, here it is, only 16 months later and we are in the same place again. I could really bitch and complain here but will refrain. The main fact is, we cannot care for someone else until our own batteries have been charged. Take care and call your doctor. If you don’t get help from the doctors involved, find new ones, reach out to groups dedicated to the issues, whatever you must do to get the help you need.

Much love to you and your family. Wende

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