Going it alone when caring for a person with dementia is a bad idea. Trust me. I’ve tried. I can say with absolute confidence that accepting help from others will improve the overall care provided to your loved one and protect your own mental, physical and emotional health.
Caring for someone with dementia is exhausting.
When you are in a constant state of fear, frustration, and heartache, it is impossible to fully rest, recover, and recharge. I think the relationship between you and your loved one can be likened to a bad romance.
When I was in high school, I was madly in love with a boy. I would have done anything to make him happy. During one of our many, highly-emotional break ups, my sister bravely offered some observations. Never one to mince words, she told me that my handsome, academically advanced, musically gifted, and athletic superstar guy was a parasite who was sucking me dry. Not only that, but if I continued with the relationship, I would end up a dry, empty husk, unrecognizable, and devoid of energy, emotion, and self. Ouch!
Painful as it was to hear her words, she was right. She could see what I could not. I was constantly scrambling to make the relationship better and to fix something – someone -- that could not be fixed.
This was not unlike the relationship I now have with Mom. I know this sounds like some crazy weirdness but there are strong parallels. I love my Mom – deeply, passionately, completely. I would do anything to reciprocate all she has given to me throughout my life and take away the pain, confusion, and sadness she so often feels these days. But I cannot. Dementia and the aging process have broken her in ways that cannot be fixed.
While my heart throb could make his own decisions, she no longer can. While he was strong and able, she is physically weak, cognitively vulnerable, and dependent on others.
When dealing with someone who has dementia, one person simply cannot provide all of the care needed.
No amount of love and gratefulness can relieve how physically taxing it is to lift an adult who does not want, or have the strength, to move. It is often impossible to escape the endless barrage of loaded and sometimes bizarre questions that are asked again and again and again. On certain days, finding the words to comfort and reassure Mom that she is safe and will not be homeless by 5 pm today is impossible. And, nothing can lessen the emotionally-draining guilt of feeling that what you do is never enough.
Believing you are the only one who can care for your person with dementia, is wrong. Full stop.
You may think you know what the person you remember needs most but, the reality is that even they no longer know what is best for themselves. You are absolutely right to believe that no one else can care for your loved one like you do -- no one else has the history, the experiences, the love, but – and this is BIG - others can supplement care for those we love equally well, and often even better, than we can.
The incredible people caring for those living with dementia are experts. They have been trained and work within a system where they are supported. Most have provided care to thousands of people over many years. They recognize behaviours and have strategies to help mitigate all kinds of challenges. They truly are remarkable people who can look objectively at situations and offer help in ways that we cannot. They can also go home and rest without the same emotional burden we carry.
So, trust me on this one, if you are trying to go it alone, STOP.
Take a breath. Step away for a minute... or a day. Think about what you need to help yourself and the one you love thrive in these difficult days. Go out and actively seek and accept help - in whatever form - whenever it’s offered. Whether it is professional services, community programs, a sympathetic ear, food (but only the good stuff!), a coffee break, or whatever you need.... take it! T-a-k-e i-t!
This journey is long, difficult, painful, and unpredictable. So, when someone offers help, accept it graciously and guilt-free. Don’t worry about paying them back. Someone will need your support in the future, and you can pay it forward then.
Lessons Learned
Dementia is too hard to manage by yourself.
If you try to do everything yourself, you will suffer – physically, mentally, emotionally.
You may feel alone but you are not. There are other people (family, friends, professionals, volunteers) and programs in place that you can rely on.
Help may not magically appear. If it doesn't, find the energy to actively go looking for support and services. This assistance will benefit you and the person you are caring for.
Take time off for yourself regularly and when needed. It’s ok to do so. Honest. The sun will continue to come up and your person will be ok for those few hours you take to try to catch your breath and allow your heart and mind to rejuvenate.
SIDE NOTE: I have learned that many people working in this field, also have parents with dementia and are struggling with the same fatigue, confusion, frustration, and guilt themselves. As a result, most are kind, compassionate and understanding. I’ve seen the pain and fatigue I feel reflected in their faces and bodies as they’ve tried to help me care for Mom. Trust them when they say they understand. They really do.