Care givers care for each other

My dad and I aren't the only caregivers that go daily or many times a week for our loved one.  There are two wives of residents on mom's wing that are there everyday.  There are two sisters that come several times a week to care for not one parent but both parents.  There are sons, daughters and siblings that try to get to the home as often as they can.  I have the pleasure of getting to know these people and other caregivers through a support group that I belong too.   The similarities between us are many.  Of course our loved ones all have dementia.  We compare histories, we compare symptoms, we share ideas and solutions to the similar problems that arise in our loved ones.  Mostly, we share emotions and feelings and that is where I find the most similarities.

Often we will chat and reminisce about our loved one before the dementia.  We talk about what they were and they accomplished.  We share funny stories, family histories and even open the doors for a skeleton or two in the closet to come out.  I love these conversations because we laugh and smile and for a few moments we are able to forget the present situation and we're feeling happy.  It also allows me to get to know the resident, albeit vicariously.  It gives me a sense of who they were and overtime they begin to feel like good friends that I have known a life time.  It gives us a sense of community and fellowship and security because they know when they aren't there I'm looking out for their loved one as well as mom and I know when I'm not there that they are looking out for their loved one and my mom too.

There are moments in our lives when the frustration we feel will bring us to tears.  This we share too.  In Lewy-body dementia the levels of cognisance fluctuate often, even throughout the day.  In the early afternoon mom can be there and understanding the situation but by the late afternoon she is paranoid and not understanding and thinking that dad and I have done something terrible.  The frustration comes when I try to reason with mom, still hoping she will understand.  I am learning not to bother trying to reason with a dementia patient and instead I sit silently listening to the accusations and all the while my insides are churning and I bite my lips.  One resident won't eat anything that his care giver makes for him anymore thinking it has been poisoned and it's the poison that makes him forget.  Other caregivers are frustrated because it only weeks ago that their loved one could still walk with a walker and now is using a wheelchair almost all of the time or they won't eat now but weeks ago were eating normally.  While others are frustrated with themselves because they wish they could do more for their loved one and others but their personal lives and other responsibilities simply don't allow for it. 

Guilty feelings are also shared.  Many of us had an inkling that our loved one may be suffering from dementia but we all shoved those thoughts away instead of listening to what we knew.  Some years ago I found an article on dementia symptoms and I sent to my father, my aunt and my brother David.  My father read it and concluded that the doctors would know if it was dementia, putting all his faith in a medical system where 90% of the doctors know nothing about dementia.  My aunt read it and commented that it was interesting reading and very possible.  My brother David said he read it but I don't think he did.  I just left it at that because nobody ever listens to me anyways, they hear me, but they don't listen.  Other care givers had similar experiences.  They tried to talk to other family members and discuss the possibility that it might be dementia but they too were shot down.  We all wish we had pursued our hunches and pushed for more evaluations and testing.  It's not that it would have changed the outcomes but perhaps it would have changed the present situations that we are all in.

There are many reasons why we feel guilt.  One of care givers honestly wishes her loved one would pass away.  It's guilt that they feel for saying it out loud and wishing and praying for it.  Yet, I understand those wishes so well.  Many times I prayed for God or the universe or who or whatever to either end mom's suffering or make her better.  Of course the latter happened but my prayers weren't on behalf of my mother, they were for me.  It's so hard and painful to see a person you love suffer in any way.  There were days when my own pain was so overwhelming that I felt I couldn't bear it any longer and I would fall to my knees and pray for God to take mom to end her suffering but also to end mine.  Unless you experience your loved one, unable to really talk or think or walk or enjoy life or living you don't know the feelings of helplessness a caregiver experiences.  If they had a headache you could get them an aspirin.  If they were hungry you could get them food.  If they were thirsty, you could help them with a glass of water.  But when a loved one, just sits there staring at a window or a wall, unable to say what they need and the care giver is unable to really help them, well your heart is constantly breaking and you feel absolutely useless and truly helpless.

Anger is another very common feeling we share.   We are angry at the system that makes cut backs to extended health care and workers that are needed are getting laid off and us care givers are given no choice but to pick up the slack and fill that void.  We get angry at our loved one that we are caring for because we always remember who they were and that they did have the capacity to reason, feel emotion, talk, walk, eat and go to the bathroom and often I feel like screaming out "Jesus Christ Mother, you know how to do this !!" but I don't.  Then I get angry at myself for feeling angry at my mom. 

Anger often turns to resent.  Sometimes I feel resent towards mom and my dad.  I resent her for having dementia, I resent dementia, I resent dad for really no reason, I resent my brothers for not being here.  In fact I spent an entire month burning up with resent towards my brother when he went for a holiday to Australia.  I resent them more when mom gets in a mood and blames dad and I for the situation and says that Doug and David will come and take care her.  Again I just want to scream at her "Where are your fucking precious boys now mother!!" but I don't.  I see some of this resent in all of us care givers.  Wives and husbands are resentful towards the children they raised with their spouse and who don't or can't help out.  Siblings that care give for a parent are resentful to their brothers and sisters who don't.  We are all slightly resentful towards those who don't understand why we do what we do or those close to us who stay in denial and believe that a diagnosis was wrong simply because they see the loved on a good day as opposed to a bad day.  Dementia creates resent in many forms for many people.

Sadly and often this hurly-whirly gamut of emotions causes care givers to break.  We are constantly advised to be sure to take time for ourselves and to do some self-care.  I laugh at that.  Every time I go away for a couple of days, I am overcome with worry and I phone and check up on mom.  Do I really enjoy my self-care, no, I feel guilt, worry and fear.  My self-care now comes in form of a pill called Prozac as it does for many care givers. 

So we care givers stick together.  We hug each other often and tightly.  We trade off the shoulder to cry on.  We talk to each other.  We laugh together, we share together and we mourn together.  I have met some incredible and wonderful people during this time and I am so very glad they were put on my path because each and every one of them has helped me in some way.   I care for each and every one of them because that is another role that care givers have.  Care givers must care for each other too.