a month ago my daughter asked me if daddy was "bad".
"no", i said, "he was sick". and i left it at that. since then i feel that one day i will have to explain myself to them. explain my actions, explain why i chose to care for their father over them, explain why his body acted the way it did.
when jim had died i found files on our computer, a sort of mini memoir, of major moments in his life along with some advice for the kids. i have been thinking that i should do the same.
i tried it. i failed. it just isn't my thing.
then i tried it again because i don't want my kids dealing with rumors for the rest of their lives if something should happen to me before they are old enough for me to explain myself to them. and it works this time. i'm writing to them not as a memoir but as a work of fiction. and not our whole story chronologically though. i am starting with the last hour and a half that jim was alive for, if you would would call it alive. i've changed our names and it is just about how i felt like i was racing death in order to meet him at the moment that the story starts.
but writing what had really happened and how i really felt as a work of fiction made me realize something. i am still in denial about the about most of this experience with death. TOTAL DENIAL. i can't even admit to myself that i felt some of the things i did, even on pieces of paper that only i read.
i'm really not sure how to deal with this or if i even should at this point. i'll just keep writing until i am finished, maybe it will sink in then.
I could have written this blog. Even my husband's name was Jim. I'm only 3.5 months out, so I'm still fresh and raw. My little girl sees pictures of him or something of his and says, "My Daddy." Hell, she tried calling him on any phone she could find for a month. I have thought about writing what happened during his last 12 hours, just so maybe it would get out of my head - but I haven't done it yet. Jim couldn't even record books for Sarah, so I don't have any files of his to stumble upon. I have also wanted to write "our story," maybe that will be easier than if it was just me. I completely relate to your concern of having to choose caring for Jim over your children. I appreciate your candor and your blog.
ReplyDeleteg, your concern and privacy, the children and how things may affect them is touching...it's tough trying to sort through this stuff, but you've got a pretty good handle on it.
ReplyDeletefred
Hi Gail?
ReplyDeletePaul was diagnosed with a frontal dementia,the aggresive behavioural type. As the dementia accelerated. He became more aggressive. I got rid of anything heavy that could be thrown, as he would throw whatever was closet to him. I locked up tools and knives etc. because of threats. I put a lock on my bedroom door so I could feel safe to go to sleep. Most of his punching or kicking me happened in public, such as on the street he would kick me in the butt. If someone else made him angry he would end up punching me in the head either with his fist, or with a bottle of water. This was more embarrasing than painful. On a city bus he would yell out, "I feel like killing you." I have had people in Sears store who were going to call security because he said he lifted his fist as to punch me in the face and threatened to chop everything up in pieces. He threw a steak knife into the wall. It left a dent in the wall. This was directly across from where I had just been sitting. I just got up to go to he fridge. The look on his face was one of shock and disbelief at what he had done.
I need to tell you, that this type of behavior, plus yelling at other people in public, especially in stores, stuffing stuff in his pockets like cheeries, napkins, plastic bags etc.. were all part of the disease acting out. Impulse control had gotten worse.
A lot of the time, other then being super critical, a he also had sweet periods and had developed a sense of humor which he didn't have before. It was like living with two different people who could switch in an instant. Nursing homes would not take him because they were not trained to deal with violence. I felt abandoned by the health system, as they didn't know how to deal with it. I had no respite and my only resource was an online group for Frontal temporal dementia, although it was mixed dementias with only two that I know of that were similar with the agressive violent impulse control issues. I learned all I could, and pretty much learned that he couldn't change his attitudes so I needed to change mine. It took me about a year to get that down. Once I was able to stay calm even when he was upet I could shorten the duration of the agitation and output of that. The only other option was a mental hospital for violent people. He was not a big man, only 5'8 and about 140 pounds. He would not have survived in there. I chose to take care of him.
I took him to the hospital because of breathing problem. He died four days later. I wasn't prepared. I guess we never are. I had a very difficult time dealing with his death. I felt a major part of me was missing and I no longer had a purpose as I had been caregiver for him for 18 years. I didn't know who I was anymore and I felt as if the grief and crying would never end.
It took me over a year to get interested in life again. It is a whole new world. Everything is changed. There is no time limit on grief. Just tell your children all the good memories, and as for the bad ones they witnessed, telling them what you already have is good. When they are older it will be easier to give them more information on the disease. As for yourself writing memoirs for them, you will be able to do that later, maybe many months later but right now you are just surviving. Denial is normal even for many months. Just progress at your own timing. The day will come gradually but it will come, where you will actually begin feeling normal again and alive.
I will be praying for you and your children.
Annie
annie, i think i found my widow twin!! i have never heard of anyone like you! yes, my husband was diagnosed with FTD but after brain autopsy he was found to have ALZ, which was a shock to the medical community at UCLA. it is a very hard disease to deal with. i will private message u later. take care. -gayle
DeleteHi Gayle,
ReplyDeleteThere is much more I could share but I'm doing well now. If you need to share, there probably isn't anything (or much different) that I haven't experienced than you have. I am speaking of behaviours, hurting things said, anger at the health system and others.
I am trying to say, I am open and understand how degraded and put down a caregiver of a loved one with FTD can feel. I think for you, it was probably worse because of how young your children are.
I just happened on to your site here from a link from another couple sites. I'm glad I did. I got a message on my face book but I didn't know if it was from here or from my blog. Now I know. Thanks. You know where I am.
Take care,
Annie
This comment has been removed by a blog administrator.
ReplyDeleteThanks for removing my email address, Gayle. I appreciate that.
DeleteI'm glad you have a widows' site to get together on with others who are still in pain. For me to share what I did on here was hard, because to share I needed to let you know some of the difficult stuff that others do not understand. Now that I am further ahead in the healing process, I just want to focus more on the good memories of Paul I could have used a group earlier on but I didn't know anyone who had similar symptoms. This made it a lonely road. I did learn much and in retrospect, can see how much I was blessed through it and afterward. You don't come out the same as you were when you went in. That can be good or bad, depending on how we choose to think on it. When you are in it, that is more difficult to do. Once the heaviest part of the grief is past we can start seeing more clearly the blessings we have gotten from being there for someone we loved as they were also going through this thing. I am at a point now, where I can begin doing things that I enjoy doing and am making a new and different life for myself. I pray you will do well and eventually have mainly happy memories and that your children will also focus on the happy memories. They are so beautiful!
May God watch over you and your family,
take care,
Annie