Written by Amanda Thornton, MSN, BSN, RN, CIC, VA-BC
For anyone who is a caregiver or a loved one of a person with dementia, the journey is not easy. Emotionally fraught with pitfalls and seemingly insurmountable obstacles each day, caregivers face incredible challenges that no one else but another caregiver can relate to. What seem like molehills for most people can be mountains in a house where there is a person with dementia, and no amount of “good advice” from friends and neighbors who think they know best is going to help. This is what we face, and the horror of this devastating disease slowly taking away someone we love so much, and changing them into someone or something we do not recognize, is like a bad B-rate horror flick we have to actually live through. A private personal hell some days, and other days we see the sun peek out behind the clouds and we feel incredible amounts of love and reward for what we give to that person, knowing that we are the only ones who can provide for them what they truly need.
We three sisters have experienced both sides of caregiving, being the family member of a person with dementia as well as being professional medical persons caring for a patients with a diagnosis of dementia, psychosis or other mental illness. I will say, there is a HUGE difference for me personally when I approach the two and I had to reflect and really ask myself WHY. Why is it so hard to care for my mother and yet so “easy” to care for strangers, even difficult ones, when my “nursing hat” is on? Why do I get so emotional, so reactive, so wrapped up in the small things ( the “molehills”) with my mother when those things would not even be on my radar if a person is my “patient”? So many caregivers have asked me over the years- “why is this SO HARD”? I have to say, unless you are a caregiver of a loved one with dementia you just don’t understand the emotional DEPTH to this question……it is most certainly a LOADED question.
As with all long term relationships, there is a lot of historical “emotional baggage” that comes along with them, and as my sisters and I know very well, a parent child relationship is possibly one of the worst for carrying that emotional baggage forward into caregiving. Just because the person goes from being your mother to being a person with dementia does not mean all of that history just disappears one day, and you can approach your caregiving with detached professionalism- even if you ARE a “professional” such as myself. My mother is now ten years into her dementia journey and I keep thinking “this will get easier….because we have now gotten used to it”, but sadly this is just not the case.
This is one of the many reasons why so much of the advice for caregivers is to try and recognize that no matter how hard you try to “separate” yourself and not take things personally when caring for a family member, it is almost impossible to do so. This part of caregiving is one of the most difficult things to personally face. Our emotional baggage gets carried into the daily task of caregiving, there is no way around it. It is important to recognize that in order to help your loved one with dementia you must also help YOURSELF by taking care of your mental and physical health as well and recognizing when caregiver stress is “stressing you out”.
What is caregiver stress? Caregiver stress is a perfectly normal response to caring for someone who is ill, be it dementia or some other diagnosis. It is a normal occurrence in both the professional world of nursing as well as for individual caregivers at home. As the chief clinical officer of a hospital I had to deal with many of my employees who expressed to me that they were majorly burned out. Caring for difficult patients is no joke one of the hardest jobs in the world, and as a nurse you get to go home at the end of the shift! When you are a 24 hour caregiver, this is not an option. You cannot just up and walk out. This also means that often times caregivers “short” themselves and do not pay attention to if their own well being is suffering. The Mayo clinic says to watch for these common signs that you are being stressed out as a caregiver:
1. Feeling overwhelmed or constantly worried
2. Feeling tired often
3. Getting too much sleep or not enough sleep
4. Gaining or losing weight
5. Becoming easily irritated or angry
6. Losing interest in activities you used to enjoy
7. Feeling sad
8. Having frequent headaches, bodily pain or other physical problems
9. Abusing alcohol or drugs, including prescription medications
What can you do as a caregiver to help yourself maintain a healthy mind and a healthy approach to caregiving? The three sisters advice as both professionals as well as coming from having cared for a loved one within our family is to do the following:
1. Find a support group. The help you find in local support groups is so important, and cannot be overstated! Recognize no one is an island, you cannot do this alone, nor should you have to!
2. Support your own mental health by seeing a counselor. There is nothing shameful about recognizing that caregiving to a person with dementia can seriously impact your own mental health. We three sisters have each other and our Dad to lean on and share the load with caregiving plus years of professional experience and it still feels overwhelming! After several very painful interactions with our Mom over the years, we decided it would be very beneficial to see a counselor about “all the feels” we feel when caring for Mom. The amazing thing about it? It can be free with most insurance plans! Call your health insurance and ask if they cover this, they likely do.
3. Make a care plan for your loved one. A Care plan is the very first thing that any medical facility will do when a person is admitted, be it to a hospital or a long term care facility. A care plan can be a very easy thing to develop on your own, and allow you a daily guide to help you navigate the day to day tasks that come with caregiving. See our blog post on “How to make a careplan”
4. Give yourself a break. 24/7 caregiving is not easy, and there are lots of things that can help such as in-home respite, adult day care centers and programs, and even short term nursing centers that can give you a few weeks or months off if needed. Again, these are usually paid for by most insurance plans.
5. Be kind to yourself! Recognize that caregiver guilt is normal, and give yourself a pat on the back for all you do day to day. They may not tell you this, but you are a hero to the loved one you are caring for.
6. Know that you are not alone. Even though it may feel like it, you are most certainly NOT alone. There are literally millions of people in your shoes, doing the same thing as you and dealing with the same stressors (Including our family). Sometimes we can loose sight of this, but do not forget that YOU ARE NOT ALONE.
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