You say you want happiness but you are addicted to your unhappiness. E. Tolle
My new friend that I met at the long-term residence where my mother used to live before she died, asked me if I thought stress and fatigue caused dementia. I gulped. I really didn’t know how to answer her.
I wanted to tell her that long-term stress can be one of the many factors that causes a myriad of diseases, including dementia. But I didn’t have the heart.
I have watched this woman (who clearly has her own health issues) visit her mother who now lives in the long-term care residence where I now volunteer. I have watched her from afar – her body language and her face tell the story. She is burnt out.
She tells me that she visits each day since her mother arrived in the home – she stays from early morning (before breakfast) to early evening (after dinner). Every day.
My heart goes out to her. She cannot continue this pace without harming her own health (although I suspect her daily fare has already taken its toll on her).
How much is too much? Where do we draw the line?
I don’t have the answers. But I do know this from my own personal journey of caring for both my father and my mother, both who had Alzheimer’s disease: when I truly became aware and began to pay attention to my emotions, I learned to let go of my need to control and my resistance to what was happening.
That’s when everything changed. I accepted my new reality – and I began to live in the present moment.
I began to make better decisions – I gathered more information, I asked questions, I accepted support and help.
I dropped all of my expectations – I no longer made plans that were unrealistic; I lived one day at a time, one moment at a time.
I dropped my need to control – I accepted that if I went with the flow of the day, instead of trying to map out the day, minute by minute, that everybody was calmer, less stressed; yes, happier. (When we try to set an agenda, other people do not fall into line, and that makes us unhappy. When we let go of the need to set the agenda, we begin to live in the present.)
When the hospital staff and her own personal physician determined that our mother’s needs would be better met at a long-term care facility, we discussed it with reason and love (for our mother and for ourselves!). We made the difficult decision to agree to the hospital’s suggestions, even though we wished we could care for her at home (as we had for our father). Difficult decisions, but made with care and love. And we forgave ourselves.
Once our beloved mother was at the new residence, we did visit daily and we did stay for many hours but we knew from the very beginning that we would need to let go in time. After a few weeks we let go. We made the pact that we would only visit her and bring loving energy – if one of us was over-tired, fatigued, or stressed we would ask the other to visit. We would rest and allow ourselves to re-nourish our spirits before we visited again.
In time we learned to visit when our mother was alert and ready for company – we would often take her for walks or sit outside in the gardens of the residence where we spent many hours, sitting in silence watching the birds.
She enjoyed music therapy, drinking multiple cups of endless tea, or just sitting with us in the lounge looking out the large windows.
And we learned to let go – we learned to be daughters again; not caregivers. That is the most difficult thing to do…to stop being the caregiver. We recognized our need to control everything when she first began to live in the residence. Oh, sure, it’s necessary to be their advocate and to ensure they are properly cared for and attended to, but at first, we wanted to control everything! We don’t want our mother to wear that outfit – she doesn’t like it. We don’t like music played in her room, please turn it off. Don’t leave the door open. Don’t leave our mother unattended in the lobby. We don’t like her dining table companions; please move her to another table. Do you have to serve that for breakfast? She just likes toast and tea.
Oh, the list was long. So much control, so little time.
But in time we learned to let go because we learned what was important. Does our mother still feel safe? Does our mother still feel cared for? Does she feel loved? Does she feel that she matters?
When you can answer yes to the above questions, then you can be assured that you are doing the best that you can. (And that means if our mother does not like the new residence (which she didn’t) that we have to accept that. And let that go, too.)
I often tell people who are struggling with how much time should they spend with their loved one that the answer lies within: Do you bring your loving energy when you visit? An hour or two a few times a week or even less is much better than a daily visit that is filled with resentment.
We are not here on earth to heal our loved one. It is no one’s fault that someone is ill. But, nor is it our job to fix the situation. If our loved one does not like their new home – we have to accept that what is, is. And for those of us who think that the longer we stay and visit, the more our loved one will like the new home – that doesn’t work! Take it from me – in nearly three years, I have never seen the parent finally admit that they like their new home. Never! That doesn’t mean the residence is not nice and comfortable, it means that the resident just doesn’t want to be there. (And they have a right to their own opinion. And besides, in a perfect world all of us would like to stay in our own home with multiple caregivers to attend to us.)
All that we can ever do is visit our loved one with a full and loving heart.
So when we ask ourselves how much is too much? The answer lies within us. Are we at peace with our visits? Are we enjoying our visits? Are we bringing joy and laughter to our visits? Do we enjoy and meet the other residents? Do we sit and talk to others – enjoy a laugh or a story? Do we share our stories? Do we share our gifts? Do we join in the activities with our loved one? Have we spent time getting to know the staff? Do we memorize their names? Have we listened to the staff – really listened? Do we join in, mingle, tag along on outings? Playing bingo with your parent may not seem very exciting, but it is an excellent way to get to know the other residents, staff and volunteers. Your parent might enjoy the companionship more than you will ever know. And family members begin to form bonds and friendships that become a support system…truly worthwhile!
If the answer is yes to the above questions, then you are probably visiting your loved one with plenty of love and peace.
But if the answer is no, then ask yourself why not? If you have real concerns, then advocate for your loved one. If necessary, find another residence.
But don’t allow yourself to visit many long hours and be completely miserable. Because your loved one (whether they have Alzheimer’s disease or another dementia-related disease) can read your energy. That’s when I would humbly offer to you: that’s too much. You need a rest. You need compassion – for yourself. Your health matters, too.
How much is too much? I don’t know the answer to that. But I suspect that you do.