QUESTION
I have been caring for my elderly father who is in a nursing home for over five years. It started with three more family members helping out but now I am basically the only one. It gets harder and harder. I am only 37 years-old and the youngest of my family. For the past three months, I have done nothing but visit him and work. It has begun to conflict with my personal interests. I can’t go anywhere for long periods of time; my peace of mind has long been gone. I think I need some help.
Although I regularly try to attend a local church, there is no help when it comes to this matter. I have nobody to help with visitations except for one sister who moved and comes once a month to visit our father for about three hours or less. After all these years, I don’t know what else to do. I am tired.
Any suggestions?
Sincerely,
The Youngest
ANSWER
Dear The Youngest,
You have taken a lot on your shoulders and no doubt your family members are relieved that you are doing this so that they don’t have to. However, it certainly is not fair to you. I remember feeling like I wanted to scream at my siblings (who lived 1,500 miles away from our parents), “If you don’t come and give me a break I’m going to quit and let whatever happens, happen!” Then I felt wracked with guilt! I was doing full time caregiving as my parents were not in a care facility. I learned that feeling guilty and continuing to do the same things did not do me (nor my parents who got the brunt of my growing resentment), any good.
Ultimately, I learned that I needed to plan in advance for the next step and line up resources to take on additional burdens. I also needed to learn to advocate for my respite needs. As for current relief, I wound up making a deal with my siblings that they would come and spell me (provide some respite time) for a week each quarter. They could divide it up however they wanted, they could split the week, but I needed one of them to give me a week off every three months for some “me time.”
Taking care of yourself is critical. You’re young. You need to socialize with people your own age and have some time to yourself as well. How else will you recharge your batteries?
When my siblings arrived, I basically tuned out all caregiving responsibilities. I found a local monastery that allowed me to book in for a week and I did silent reflection and caught up on a personal writing project I had neglected for two years. Another time I went to a town near me that was on the water and checked into a hotel with a gift card I got from a friend and spent three days and two nights on a mini vacation about forty minutes from my home. Mostly, aside from work projects, I went out with friends and caught up on passion projects. I read a book. I turned off my social media and phone for eight-hour blocks of time. I sat in the sun and went for walks. The basic goal was to revel in not having the pressure on me to be there “in case” because I was always just waiting for “that call.”
Can you request this type of break from the three other people that were helping originally? Could you ask them each to provide you with a scheduled one week of relief every other month? If there are three, they would only need to be there a few times a year. One week each month where they take over visits and you get to recharge. Or, perhaps they would take on one visit a week – if that’s possible?
During those breaks you can choose how you want to spend it. Going physically away and taking time from both your business and caregiving jobs or just taking time away from the pressure of visiting and being on-call. It sounds like all of dad’s needs medically and physically are being met by the people that work at the nursing home so you can offer your respite person a “9-1-1” type text code to let you know if there’s a real crisis.
Since your dad’s physical care needs are being met, what is driving your visitation schedule? Is it something you feel you are obligated to do or is there a need to have you there as often as you go now? Are you feeling uncomfortable about the staff or facility that you are checking up on them or does your dad only come alive when you’re there? Have you thought about what would happen if you went less often?
One of my caregiving friends had finally put his wife into a memory center when he could no longer physically take care of her. He was exhausted visiting daily. When I asked why he needed to go daily, he said he did it because he felt guilty that she wasn’t at home anymore. Once he gave himself permission to visit her three times a week, he began feeling much better. No more resentment. He started having a life again. His wife was fine with it. How about your dad. Would he be okay with you visiting less often? Have you asked?
I would also recommend that you join a support group, either in-person or virtually, for caregivers in your community. The nursing home may even host one. This will provide you with emotional support and a place to vent. Professional advice from an experienced leader is a big bonus. Put “Caregiver Support Groups in [Insert your community]” in your browser to find a group that meets your time and situational needs. You can look for a group that focuses on people caring for parents (vs spouses or people caring for children) or you can join a general group with all kinds of caregivers. You can also find groups through the various associations and organizations connected to aging, Alzheimer’s, Parkinsons, Cancer, Blind/Deaf, Veterans, and others.
I am surprised that your own church doesn’t have some kind of support group network that can help you but you might find a faith based group at a different church or organization.
At work, check your human resource department or benefits administrator to see if your employer has an EAP (Employee Assistance Program) that may provide for respite volunteers or funds for hiring someone to sit with your dad, if that would help. That program should also be able to direct you to counselors, social workers, and support groups.
If your dad was a veteran, the VA provides respite services for the caregiver so check the local Veterans Administration office.
Your Area Agency on Aging (may be named something else that is similar) government organization should have a list of resources, as will local adult day care or memory care centers.
Hope this helps.
Sincerely,
Fern