Struggles of a carer

Today I leave at 12.30 ish, pick up mother, take her to her class on living with dementia, another 2 hours take her back settle her, head home; 5 hours minimum.

I wake up in the morning feeling that the day has gone – passed me by, donated to the care of mother.

I resent how much time I seem to need to spend ( subjective – what is the absolute necessity v feeling that she has enough v spending time with your mother).  I have medical and financial responsibilities. Sister does the shopping and family.  Mother doesn’t really understand that doing the shopping is her time from our lives.

Mother is being highly manipulative. – is this so ingrained she can’t loose it even as she starts into dementia?

She pulls a face when my sister says I am doing next visit (and vice versa).  Yet she is full of sweetness and light when I go but moans about my siblings. She can never value a visit. And I can count on the fingers of one hand the times she has reported pleasure at receiving a visit. I may only need one finger.

 

How do you care for a woman who wreaked havoc over your childhood (and doesn’t even realise)?  For which you have been in counselling on and off for many years so now you are aware in the present to try and build a life that is pleasurable and make good relationships ( try), try not to feel empty, not numb out, PTSD triggers, cope with the pervading depression. Feel anxious and fearful. Yet as a human being i cant leave her to her own devices she has shown time and time again she cannot cope – the number of phone calls I have have had form previous wardens/accommodation managers.

I try to remember she had mental health challenges – born needy, father left at 5, violent home, these are her survival coping mechanisms. But they hit us hard, me and my sister.
As we still try and make her happy – our life long curse is to fail at this despite huge and thoughtful efforts that come at a cost at times.  It clouds my future not knowing how long this is going to go on for, guilt at wishing it over. Will I cope with the loss?  I am always clam and pleasant and understanding – no point in getting cross with her.

 

Our brother has all but walked away saying “she ruined his early years, she isn’t going to do the same with his later years”.  We miss him from the family unit, we miss his help – a visit relieves us of the need, just giving a brief break from the continual responsibility and this helps mentally/emotionally.

 

My sister and I try our best to share the caring load. We have slightly different ways and viewpoints and these also change from day to day and week to week.  Sometimes there being only one person is easier but there are benefits from sharing the load. The load diminishes and the responsibility that gnaws at you is less on the days that are the other siblings visit days. But it reduces the load by a third not half as the need to co-ordinate and liaise is still there.  And work to stay a team. It is great when she is acutely ill and great when she is well as we have good routine and acutely we all do what we can including our spouses if needed who kindly support us or her as needed. But this recovery period when she is putting it on, not coping – or pretending to, is hard as it is difficult to gauge how much she really needs.  This is a chronic load and it is important we don’t burn out so we need to pull back from the frequent visits she needs when acutely ill to conserve energy. And feeling “played” doesn’t make you feel good or valued, just the opposite but we don’t feel we can walk away.

She also plays her carers who get worried – yes she can look ill, at deaths door because she stops eating and drinking and goes a horrible shade of waxy white which draws people in.

We have been doing this for so long that we know the circle. We probably don’t seem sympathetic. We have found that whatever we do she does things at her own pace and will, and cajoling doesn’t help. She likes the attention.  So as this happens a lot – about every 6 weeks at the moment, previously the same but mostly winter season, now its all year round. When she is not eating or drinking, we feel all we can do is supportive visits with strict time boundaries and leave her with fresh fluids and light snacks for her to take when ready. If she doesn’t that is her choice.  New carers feel much more sympathetic and buy into getting her to drink/eat only partially successfully.   I get texts reporting how ill.

She was caught out this week when my sister made an unannounced visit to help out and caught her, up eating 3 packets of popcorn just after the carers had left anxious, texting me as she hadn’t wanted to eat or drink and was  languishing in bed.  I had rearranged my visiting plans based on the text  to increase the visits to see for myself, support the carers and stop urgent calls which are hard to manage.  So this behaviour really impacts.

 

Meanwhile my life feels on hold.

 

How many other carers are feeling the same? Is it different if you love your relative?  Do you have hate and love in your heart for the (good) history but hate in the here and now of being trapped? Do you feel more generous if you love them?  Are there behaviours we all need to know about and do that will make things better for our carers  when our time comes?– thinking ahead as I don’t want my relatives trapped or is this almost inevitable?

I do a short mindfulness exercise to know that it is the present that is important and not the globalising to a long unchanging future of burdensome care.  So much for a joyful retirement.

I smile in my meditation.