by Peter Mangiola~If you have never had a loved one look at you without recognizing who you are, the idea of grieving the loss of someone that is standing right in front of you might seem counterintuitive. In fact, even those who have a loved one with profound dementia often have trouble resolving their own emotions. There may even be multiple times when you may grieve, recover, and then see your loved one slip even further away from you and experience that loss all over again.
One of the most powerful emotions you may experience when caring for a loved one with dementia is loss. You may feel like you lost the person you knew, you lost the future you believed you had with them, you lost their companionship…or you may quite rightfully feel the pain of losing the lifestyle you once had (because you are going to have to take care of them 24/7). None of these emotions are any more or less valid than the others.
Coping with loss starts by recognizing that loss is a process and not an event. There will be ups and downs; sobbing despair is more common than wild optimism that a cure will be found, but both are perfectly normal. Denial of the problem and suppression of your feelings is also entirely normal.
Eventually, you will accept the truth of the situation and feel like you can cope; and then you’ll find one day that you’re overwhelmed again with pain, anger, sadness, and loss. Accepting this cycle is the key to coping with the feelings of loss.
Caregivers who attend to people with dementia often find themselves resentful for the literally constant demands on their time and attention. You may be forced to cut back on work or stop working altogether; at the very least, you will have dramatically less self-directed time on your hands.
The most important thing you can do if you experience feelings of resentment is realize that they do not make you a bad person; they are a perfectly natural result of an incredibly stressful situation. Who doesn’t wish, when stressed out, that whatever was causing the stress would simply vanish?
If these thoughts become commonplace, you may want to seek emotional support from friends, family, a support group, or a psychologist. But when they are infrequent, scary as they might be, these thoughts are simply normal.
Inability to Cope
It may seem strange to talk about ‘coping with an inability to cope’, but it is nonetheless a very real and necessary part of dementia care. The human mind is only capable of handling so much responsibility before it desperately wants to stop. The act of caretaking for someone with dementia is an ongoing responsibility and involves endless small decisions; even if it is not taxing physically, the sustained mental effort can leave you completely exhausted.
To cope with an inability to cope, you need what everyone who operates under immense stress needs: a break. Start by getting your loved one set up doing something they do not need constant supervision for, and use this time to take a break and do absolutely nothing. If thoughts pop up in your head, take a moment to recognize them for what they are, and then drop them. Just breathe, let your mind wander, and relax.
On a longer term, if you find yourself waking up in the morning already unable to make decisions effectively, it may be time to call a home health aide for some respite care. Having someone come in and care for your loved one a few days a month might cost a couple hundred dollars, but spending those few days just attending to your own needs can do a huge amount to enable you to continue effectively caretaking for the long term.
Taking care of someone you love as they slowly lose themselves in dementia is one of the most painful and demoralizing experiences that many of us will have to go through. The emotions it can trigger are real, legitimate, and above all they are okay. Do what you can to cope, do what you need to get by, and do not be afraid to call for some help.