Maintaining involvement in family life is an appropriate entry, I believe, to talk about in this post transition year.
Yesterday was an opportunity to include Patti in a family dinner. Sounds simple? … 4 and a half hours later that ‘simple’ task was wrapped up. <grin>
60% of that time was devoted to logistics including transportation, getting Patti up and dressed, changing Depends, transferring, cutting up food, etc. I didn’t carry a stop watch but did make use of a pocket note pad. -- Patti’s care facility is only 18 miles away, so two round trips involves 72 miles of driving out of this percentage of logistical support time.
Any visit home has parameters from all involved. Patti’s desire to go to bed by 7:30 PM may as well be written in stone and on the front end Megan has to get home from school and I need to juggle time and work in the late afternoon.
In the post home caregiving era we get out of sync with the total and absolute commitment that must be made when Patti is at home. We can juggle nothing else such as a typical daily activity like mowing the lawn, run an errand, homework etc. … And Patti after a year in a care facility is accustomed to constant and fresh staff attending to her and her needs and wants. … These “different worlds’ we’ve all become used to living in can take some adjustment when we are back together. Instant adaptation is more challenging for Patti who as a result of MS progression is easily confused and frustrated.
Maintaining involvement at home is a gamble. I roll the dice because I believe it is good for everyone and I hope they don’t roll up showing craps.
Putting Patti to bed less than 30 minutes after she left home, she could not tell me ‘what’ she had for dinner, nor ‘where’ she ate dinner, nor ‘who’ she ate dinner with. MS has destroyed her short term memory. I can only hope that in the morning that her evening of family time has slipped deeper into longer term memory and she may remember.
MY BESTFRIEND OF 23 YRS HAS MS, AND I AM DEALING WITH ISSUES'S LIKE MOOD'S AND MY BUD NOT WANTING TO DO THINGS OR LIVE LIFE ANYMORE, I THINK SHE IS GIVING UP, AND I DON'T WANT HER TO. I AM LOOKING FOR PEN PALS THAT CAN HELP ME COPE, I FLY OFF THE HANDLE, AND LATELY I HAVE HAD MY OWN HEALTH PROBLEMS AND CARING IS HARD BUT I WOULDN'T HAVE IT ANY OTHER WAY. WHERE I LIVE I WOULDN'T PUT HER IN A HOME AND I PROMISED HER I WOULD NEVER DO THAT TO HER. BUT I NEED A FRIEND TO WRITE TO AND SOMEONE WHO CAN HELP ME ALONG THE WAY. I GIVE CYN HER MED'S AND SHOT EVERY DAY AND NIGHT, WE ARE TOGETHERE 24/7. SHE CAN'T DO THE THING'S SHE WANT'S TO. SHE WAS INTO HORSE'S ALOT WHEN SHE WAS YOUNGER AND WANT'S TO DO IT AGAIN AND IN MY THOUGHT I THINK IT WOULD BE GREAT IF SHE COULD DO SOMETHING LIKE THAT AGAIN,BUT SHE DOESN'T HAVE THE ENERGY TO DEVOTE TO THE HORSE AND I DON'T THINK THAT WOULD BE FAIR TO THE ANIMAL, AND IN MY OWN SELFISH WAYS I DON'T WANT ANOTHER RESPONSIBILITY. I ALREADY TAKE CARE OF MYSELF, HER, OUR 5 DOG'S, AND OUR HOUSE, AND I DON'T HAVE TIME FOR MYSELF. I FEEL VERY SELFISH IF I LEAVE EVEN IF IT'S JUST FOR AN HOUR OR SO. AND SHE IS VERY JELOUS OF PEOPLE I HANG OUT WITH EVEN IF IT'S WITH NEIGHBOR'S OR HER NIECE. I AM TRYING TO BE UNDERSTANDING, BUT SHE FORGET'S THINGS AND I GET UPSET THAT SHE DOES. SHE USED TO TAKE CARE OF HERSELF, AND NOW I KNOW IT'S A CHORE JUST TO GET UP, BUT SOMETIMES I THINK SHE USES HER MS AS AN EXCUSE, ONLY BECAUSE I KNOW HER AND I HAVE SEEN HER SICKER IN ALL DIFFERENT WAYS, I DON' UNDERSTAND, ONE DAY SHE IS KICKING MY OUT OF OUR HOUSE THE NEXT DAY WHEN I FIND A PLACE SHE LOVE'S ME AGAIN, WE ARE ONLY FRIENDS NOTHING SEXUAL, I ONLY HAPPEN TO CARE FOR HER, BY MY CHOICE I HAVEN'T BEEN ON A DATE IN THE LAST TEN YEARS, SOMETIME'S I WONDER WHAT THE HELL IS WRONG WITH ME.. YOU HAVE BEEN THERE FOR 19 YS AND I WAS WODERING DO YOU HAVE ANY ADVICE?
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