I'm one of these people -- managing a full-time job and also caring for a loved one. And it is quite a challenge at times. My 57-year-old husband has early-onset Alzheimer's and we've crossed the threshold where he can no longer be alone by himself. I'm fortunate to have found someone to be with him during the day when I'm in the office simply to keep him company, make sure he's safe, eats his lunch, etc., but I'm concerned about what my options will be when he needs health care at home. I know rationally that I'm not alone in this, as there are many others who are in my same situation, and yet I feel completely and utterly alone.
If I may say, please don't feel that way, as you say there are millions of others that are in the same position or worse. God got you. Do what you can while you can because there is a brighter day some where. Keep going and do your best that's all that is required. You are doing and amazing thing so many can't do it but you can. Please be thankful that you can do these things. So many can't do it. You are blessed and God loves you for what you are doing. Please don't give up. Brighter days are coming.
I am sorry to hear that you are going through this! The experience of caring for someone with dementia can feel profoundly isolating. There are so many reasons behind this. Unfortunately, there is still stigma associated with dementia, and many people don’t understand how best to interact with or respond to the person with dementia or their loved ones.
Additionally, loved ones have the “double whammy” of being responsible for the logistics of day-to-day life—finances, healthcare, homemaking, safety, etc--while at the same time, processing their own emotional experience of the unpredictable changes that dementia can bring. Add any work responsibilities to this, and it can become overwhelming fast.
In a snowball effect, these demands on time and energy can result in loved ones having less time for their own friends and social activities, making it difficult to recharge. For many people, peer support, such as from dementia organization virtual support groups (ie Zoom or telephone groups), can play an important role in combating these feelings of isolation. These groups can also be a valuable resource for learning about tips for managing behavior and learning about community resources.
Since it can be challenging to ask for help, some people find it helpful to create an online calendar with requests that you fill in and people can sign up for. This can eliminate guilt--on both ends of the equation. It also gives people time to think about what they can and would like to do. Below are a few sample resources for anyone who is interested in trying this approach.
I used to work as a geriatric care manager/social worker for caregivers and their loved ones. Now I am still a medical social worker/psychotherapist, and my wife, who is 12 years older and has MS, is my care recipient. I'm juggling work and caregiving as well. My advice is usually the same:
1. find out what services are free and low cost to you and him. Even though he is not a senior citizen, each county has access to an aging and disability resource center (ADRC) that is state and federally funding to help you and him. Is he a veteran? Look into that, too.
2. Expand the caregiving circle. Church? Relatives? A former coworker of his? His best friend? See if folks can commit to hanging out with him for a couple of hours or more, if they are reliable people. Complement the informal help with paid help. Care.com has less expensive paid caregivers than the usual agencies like the Visiting Nursing Association and Home Instead. You have to be a wise consumer. I believe Amy actually hired her own folks directly. You might need an accountant or tax advice. I know its complicated and i'm sorry about that.
3. Make sure you get care and support for you: monthly massage? A psychotherapy who can hear your frustrations and plans and coach you into better self care. Time to see a friend at the local coffee shop? Time for worship or meditation? You must build that in or you will fall into exhaustion and resentment.
4. Join the AARP Family Caregivers group on Facebook if you do facebook. Very fast advice and support.
Please take care of yourself. Social isolation is bad for your health, and is one of the things most caregivers have to fight against.
Thank you, Jane! You and Amy have provided such wonderful and helpful advice!! I'm glad to know about Care.com and will definitely look deeper into any free resources that may be out there.
Finding time is a challenge because I'm a director (of O.D.) at the Oklahoma State Department of Health, and as you can imagine, it's a hectic time as we focus on our state's COVID-19 vaccine deployment. I really don't have time for self care, but I'm a marathon runner and do make time for my 6-mile run every morning. 🙂 That's the one thing I do for myself - it's my "me" time when I can let my mind wander for that one hour early in the morning.
Just hearing from you and Amy and reading your advice has helped me and brightened my day tremendously. Thank you!!
Wow, 6 mile runs! That is excellent! I once ran a half marathon and felt so wonderful from the accomplishment. We have an RN who runs our county health dept and she swears by running every day. Thank you for your incredibly important work. I was one of the helpers at our first vaccination of older folks in my county, which is incredibly rural (8,000 souls in a county the size of new jersey) and it felt like Lourdes... wheelchairs and walkers... those elders remembered polio...
Carry on and keep writing. We can help each other. It takes several villages!
@kristind795311 I'm so sorry that you are going through this and especially sorry that you feel alone. I cared for my parents and sister all at the same time and I often felt that way. I remember clearly being in the emergency room with my Dad one day for 7 hrs and people messaging me that I wasn't alone...and all I could think was I AM alone here! I don't see anyone else here helping - just Daddy and me in this little ER cubicle! BUT I knew I was not without support. And that felt like a better framework for me...lots of support out there for you, and me and all caregivers, even though you may be pretty much alone in providing the care.
Connecting with others in similar situations will help! It sounds like you've found some in-person help for now which is great. As you say, it will progress and eventually he will need more hands on care. You can do it! I cared for my Dad who had Alzheimers in my home for 6 years. The key thing is to get the right helpers and build your team. Family may be part of the team, but usually it goes far beyond family. I had one sister who eventually moved to help care for Daddy. But the team went far beyond that. I had paid caregivers while I worked, home health aides from the VA (if your husband is a veteran you may be able to get some assistance - it was invaluable for us!). I had home-based primary care and mobile doctors for Daddy. I had a guy who came and did exercises with him. I had a house cleaner and I had a "concierge" who did odd jobs for me, cleaned out closets, put up holiday decorations, ran errands etc. etc. My Mom's hair stylist and manicurist. My Dad's massage therapist. The guy who parked cars at the mall so we could walk around inside on the hot Arizona days! Neighbors and friends and other family members. When I looked at the big picture I felt less alone 🙂
Sending you a big hug and I want to say THANK YOU for all you are doing for your husband. I know it's a terribly rough row to hoe. Take it one day - one moment - at a time. We are here for you!!!
It is not so easy going through this but God only knows what we go through. Best her for her for all she's doing. It will pay off after while. She is doing a good thing, I don't know of many people that will do this but she will be fine.