Thoughts on Caregiving

Doityourselfer

In my experience being a caregiver has been and is the toughest, worst, unwanted job I've ever had.  Year after year as time goes with my husband's AD the really bad days are becoming fewer but still are highly stressful to deal with.  Yesterday was one of the really bad days for over 5 solid hours.  Awful day.  Hard to stay completely calm but I've had thousands of days when I stayed calm so I don't feel guilty if I become impatient. 

I've noted that when these dreadful days happen he is declining little by little.  His highly agitated states create so much negative energy and the way I best deal with it is to step away for a few minutes, check on him, step away, listen to music with my headphones, check on him, etc, until he is calm and we can get on with his daily routine - get him cleaned up, breakfast, meds, sit on couch, lunch, sit on couch, dinner, meds, change depends, bed.  It's a terrible life for him and for me.  Everyday is a day closer to his being free from this horrid disease.

Ernie123

You are certainly correct that caregiving is the most demanding challenge any of us can face. Physically, emotionally, socially you name it you are pushed to the limit. But are you prepared in case you reach the point where you are unable to continue? Wanting to persevere in the challenge is sometimes not enough. You must be aware of your own state of health and what your limits are. In the exhausting emotional swirl of your life it is hard to have a clear perspective sometimes. At some point you will need support or he will need to be placed in care. My DW had to be placed in care two years ago when I was becoming a trigger for her agitation and paranoia. She didn’t recognize me and often thought I was an intruder. She was becoming violent in her responses. At that point her psychiatrist said she needed to be placed in professional care, it was not safe for me or her for her  to remain in our home. I was so overwhelmed with stress, guilt, sadness, exhaustion at that point I could not make the decision on my own. The advice of my children, doctor and Alzheimer’s counselor guided me. You may be on the same path where you will reach a point where your care by itself is not the best option for you both. Two years later I look back and wonder what might have happened if she hadn’t been placed. The move was much harder for me than her. I wish you the strength and wisdom you need to carry on through whatever lies ahead.

Doityourselfer

Thanks, Ernie123.  I'll know when I've reached my limit of caregiving.  Today has been calmer than yesterday.

Buggsroo

I can relate to both these posts. 

For the most part I am ok so far but I have pretty bad days when I want to run for the hills.

I feel all kinds of emotions from love, deep sadness, rage, anxiety etc. Sometimes I am burnt out, whereas other days I can handle what is coming my way. I find sometimes I self medicate by over eating or compulsively shopping. These behaviours are harming to myself. 

I do have compassion fatigue at times, I do all the household work, bill paying, upkeep etc. I don’t fantasize about travelling to the Levant or North Africa because it is too painful. I find I live from moment to moment.

Doityourselfer

Buggsroo,   I hear you about running for the hills on those bad days!  Today is not a bad day so far.