Chapter one parenting the parent) unedited.

In May of 2012, my brother who was my parents’ caretaker was unable to continue to do so; his wife was diagnosed with breast cancer: a particularly aggressive kind and she has been in treatment since. I received the call the day after my classes ended at Minnesota State Mankato. I had ever intention of taking the summer off to garden, spend time with my husband (who had not really seen me in 5 months) and my children and grandchildren. But my parents needed help and over the years whenever a child, adult, family or friend needed anything they were there. There never was a thought of saying no I cannot come, my husband never even blinked when he began to pack his bag. It just was what it was and we left.

"Sis, can you come right away we need someone to care for mom and dad."   Tom and I packed our bags, closed up our home and left within an hour after receiving the call. Not realizing it would not be a two or even four week trip. Before the weekend we knew however that our lives had changed in a matter of minutes. We were now officially the main caretakers and would only be going home three weekends a month when my other brothers could take time off to stay with mom and dad while we took a break.

Mom, who at 82 could still takes care of herself completely (except for help bathing.).  Spends her time reading and writing letters. Writing letters to family and friends has been something she has done her entire adult life. She has several girlfriends she has been in touch with since she was 14 years old when she moved to Rochester to go to high school. She roomed with a few of these women. Her loyalty to family and friends is seen in her spending the time to talk about each and every one of her girlfriends trials as if they were her own. I have never heard a bad word out of my mother and even if someone she is anger at or who has taken advantage of her comes walking in the door, she will welcome them, forgive them, and hand them a cup of coffee and a lit Lunch (this is a whole other story) Her physical health is good for her age, she suffers some dementia, a sever hearing loss, congestive heart failure (But with the diet she shows no signs of it)

 Father has a multitude of issues and in November the family brought hospice into our home to assist in his care. He has either Dementia or Alzheimer (we are unsure) which cause him to say and do some unbelievable things. . He  often believes  he was in the service and fought in Norway ( this is where his family is from) He also believes other strange little things , including such things as that when my mother was in the hospital and then nursing home due to a fall that broke her back. He first believed she had died even though we took him often to see her. He would also later believe that mom was having affairs on him and also having babies (he thinks two Spanish babies and two African babies and they are with my brother Jerry and he is hiding it from dad) When he believed that she had died he never said a word until I brought her home to visit in-between the stay at the hospital and transfer to the nursing home. So that the day she came home to visit in between the hospital stay and the rest home he initially believed he was seeing an angle, until mom talked to him and told him no he began to cry. Stating “I thought you were dead." Then he and mom both began to cry.

The strangeness of dad's mental health comes and goes, he always knows everyone who walks in the door and can talk to them as if nothing is wrong.  His metal issue not the least bit of a problem in that area. His physical health just as tough to handle as his mental illness, as he as has end stage congestive heart failure, and is in A fib (heart) all of the time, some days he is strong enough and stubborn enough to use the bathroom and get in and out of bed, some days the complexity of his illness keeps him completely out of it and unable to handle even sitting up. At those times I fear the worst and panic creeps in as I try to get a response.  We all know at some point in the close future he will not respond or ever respond again and even though I want my father to fall asleep and not suffer like he does at times, losing him will tear me apart. Mom understands this and she also gets fear in her voice and wont sleep for days when dad falls into sleep that we are unable to wake him from.

 Being a caretaker of my father comes with a need to be able to finis and compromise, laugh, and cry. My husband and I know that we must keep an ear out almost 24 hours a day when caring for my father because he still has the ability to be mobile. Meaning there is many times when dad can get into trouble quick. One time it was eating a whole box of cream cheese and got extremely sick, at other times his catheter hurts and he will pull on it to fix it, at that point we are on the phone calling nurses to help put it back in or fix it. If he wants a shower he will crawl in it take half his clothes off and turn on the shower, attempting to take it before anyone finds him in there. Those are the days we have to laugh. One bright morning dad was doing well and we ran out of something I needed, I decided I could take a 5 minute trip into the store to pick it up; mom would watch him, I came home to mom saying “Dad what did you do!,” He was sitting on his bed in a wet diaper and cowboy hat and nothing else, " I decided to take a shower then a nap" he said as if it was not problem at all. “Dam it I am not a child. “ I told mom it’s okay no harm no foul , changed dads clothes and  the wet bedding, put  his oxygen back on,  give him medicine,  and put him to bed until he can catch his breath. Just like last night when my husband ask if he could help him to bed. Dad decided he could do it himself.  Dad said “no I can put my own big boy pants on all by myself and I want to stay up”.  Hubby just said “okay dad “and came into our bedroom and closed the door. The minute he did dad headed to bed and attempted to get into it and could not; I came in the room and without a word helped him. “Thank you sis “he said and went to sleep.

My parent’s relationship has its own unique and interesting twists. Mom shadows dad at times, afraid I suppose:  and will often tell him not to do things, then the war is on  and he will get mad and do them anyway in spite I suppose. When he is mad at mom he will turn her high school picture around and their wedding picture to face them against the wall and then he will tell us kids the story of how she went to the rest home and had an affair on him. (One day I got so frustrated I told dad the man had died. Now he thinks god got the man back for taking his wife away.) Oh well we cannot win for losing some days. Mom just shakes her head, I put her picture back up and the next day he will be carrying it around and telling everyone what a beautiful wife he has. The most beautiful day I had was the day he took it with him, the day mom got to come home. I took dad along when we went to pick her up at the rest home. But on the same breath that is the day all hell broke loose because that is the day he showed the picture to a man and said “have you seen my beautiful wife”.  And the man said “please don’t take her home she always has a smile for everyone and we would miss her. That is the day dad thought she was running around on him. God bless my father and mother. And thank god that when dad said you work too hard to take care of us , I knew in my heart I do not work hard enough, and when he said   “I am such a burden “ My husband reminded him of all the times he took care of us. That day I told dad the story of how when I was a child and he stayed up all night because I had the measles and I was never a burden to neither him nor him a burden to me. But when I said measles he said ya and rubella too.”  Reminding me that I had numerous childhood illness  that kept my parents up all night and I never heard one complaint from them as they lowered my fever and tucked me back in.  No it is not a burden in the sense that I have ever regretted stepping up to the plate to keep mom and dad in their home. But man there are days I am glad my husband or a nurse shows up so I can shut the door to the bedroom and let out a swear word or two then play a game or write for a bit.