TALK TO A
Established April 15, 1995
University of West Georgia Disclaimer
17 December 2002
It has been nearly a year now since my life would no longer be as I knew it to. My mother, 57 years old, had a headache on Christmas Day. She was vomiting but we all believed it was part of the flu that was going around and all the crap she had eaten over the holidays. While we have a family history of brain aneurysms which can be a side effect of polycystic kidney disease, my mom had had an MRA and was more or less given a clean bill of health. She had always been petrified of dying the "same way her mother did" which prompted the MRA in the first place.
On December 29, 2001, after a few days of family members being unable to get in touch with her, a family friend found her on the floor of her apartment in a coma. She had been there for at least 48 hours. She was rushed to the hospital where I was told "I'm so sorry" upon their learning of my grandmother's demise. Rushed to Mass. General, some 15 hours later, she underwent emergency brain surgery.
She had a softball-sized aneurysm which had burst. It was a stage 4 and potentially fatal. She spent a month in NICU and a week more in Boston. She went through months of rehabilitation and is now in nursing home. She has no feeling on her left side (she was left handed) and up until recently, was unable (and unwilling) to move around without help. She now requires one aide instead of three to help her in and out of bed. She does not speak well, cannot do much at all on her own.
The brunt of all her care has landed in my lap despite her brother and sister as well as my sister. I am bitter and wonder if surgery was in fact a mistake. I had a 3-month old son at the time this started and was on my way back to work following my maternity leave. I was unable to go back to work and take care of her and was fortunate enough to have a husband who was willing to make it work.
Prior to this happening, I did not get along with my mother at all but save maybe the last 5 years or so. She was always depressed and angry, nothing ever pleased her. I love her for being my mom but, I don't like her much at all.
This past year has been a non-ending trail of visitors who all feel the necessity to stay at my home. I have not had a complete week with my own family for well over a year now, since the birth of my son in October was followed by visits from family for Thanksgiving and Christmas. Her boyfriend stays here at least once a week and now that my son is 14 months old, I just want to have my own family back and I'm not even sure what that is.
I feel it is wrong for me to feel this way but I'm tired of being the only caregiver to a woman who will never appreciate all that she should be grateful for. Part of me wishes that we had found her later, that she hadn't made it through the surgery, that she hadn't had the surgery. I don't see how prolonging her life to have people help her to the bathroom, dress, eat, etc. has actually made it better.
In the meantime, her doctor suggested that our immediate family all have MRA's due to our extensive PKD and aneurysm histories. (You would think, with the history, my mom would have recognized the symptoms. God knows I will if I ever have them!) I do not currently have PKD or any aneurysm. Unfortunatley, my cousin's brain showed three large inoperable tumors (completely unrelated to PKD or aneurysms) and has been given a deadline on life though we never talk of it. He is just 32 years old (6 months older than me). This would never have been found when it was if not for my mother. Again, a bittersweet double-edged sword.
I'm scared to get this disease. I don't want to put my children through what I am being put through and have made my husband swear not to allow surgery unless there are better odds. While I hope for a greater recovery for my mother, I know that she has no idea what I've gone through to keep her where she is. The mountains of paperwork, the spend-down to get approved under Mass Health and Social Security, for what?
I would like to learn more of her odds at becoming a person again, the chances of it happening again (one clot could not be removed) and the changes of this happening to me even though I show no signs now. I've been hitting stone walls in getting answers and am willing to listen to anyone who has anything to say! This site has been a great source of comfort to me and I only hope I am able to help others someday as you have helped me.
I thank you for reading, responding and being there.
Update: 31 March 2005
This is a long overdue update to my narrative posted back in December of 2002. I sought counseling at the suggestion of many readers and have learned to deal much better with my anger towards my mother. That aside, it has been three very busy years since then and things are still spinning out of control. In December of this year, after listening to my mother continously complain of not wanting to live, I shipped her off to live in the state where my sister resides so that she could take a crack at taking care of mom for a while. I've been accused of "giving up" on her because of this move by other family members (who of course have plenty to say but never step in to help).
Since she's been down in Georgia, she was diagnosed with end-stage renal failure and given a less than 6 month term to live without dialysis. She has always outright refused dialysis so my sister and I prepared for the inevitable. Since that time, she has gotten a change of heart and has decided to go forward with dialysis but with the extensive PKD issues, I have no idea if this is a good idea or not.
In October of this past year, my mother-in-law suffered an intra-cranial hemmorhage at the center of the part where the brain is connected to the spine. She too has suffered a subsequent stroke and is right-side deficient. Dealing with her, my father-in-law who is currently on four-hour dialysis three times a week and my own mother has been a very trying time. Throw in a newborn as of January, 2004 and my now three year old, a husband going to paramedic school and basically I'm about ready for the funny farm.
Without this website, I'd already be there. I only wish I could help others as you have all helped me! Family, you're the greatest!
Time will tell if I can continue to stand up to all that life throws at me or rather catapults at me but I'm a little older, a little wiser and a whole lot more aware of the wonders in life and how important my own family is.
Update: 19 July 2007
Once again, a long overdue follow-up is due. My mom, who you may remember I shipped off to Georgia so my sister could take a crack at it, has subsequently passed as of November, 2006. While I was told to follow up with the nursing home as it was a septic problem and something that could have been avoided (therefore, lawsuit), I feel that my mother is finally in a better place and I don't want to 'rock the boat' so to speak. Maybe after all this time she will finally get some peace.
I've grown CONSIDERABLY in this time as far as still hating her, still being angry that she knew this was happening, feeling sorry, and eventually coming to peace with the terms. She is with my brother now and hopefully for the first time in her life, happy. This of course, does not come without a price to pay. Her family has not spoken to me since I "gave up on her" and "shipped her to her death" in Georgia. This coupled with the inevitable death of my father-in-law at X-mas, 2005 and my mother-in-law's complete breakdown has pushed us all to the limit.
My husband's family doesn't speak to us, and my mother's family doesn't speak to me at all. I've still had unsurmountable paperwork through and after her death, which as a certified paralegal you would think I could get a grip on. Not to mention her "boyfriend", the one that was staying here a few days week, his wife also suffered an aneurysm and he is in a rough place right now (you think????).
I am grateful that for the first time since I bought my house and have had my two children that I am actually having a nice summer! We are doing things as a family, fixing up our yard, and enjoying ourselves. I've grown a considerable amount in the last 5 years, I no longer hold the bitterness I once did ... I hold family and friends much more closer than I once did ... I cut loose ends sooner than I used to ... I'm a happier person. The awful way to state it is I have no one holding me down on any side. That may be a cruel thing to say but it's honestly how I feel.
My cousin who has the brain tumors is doing well ... his sister has cancer but it is in remission. On the other side (my dad) my gram fell and broke her hip, also had a scare with cancer and is now doing great at 88! An inspiration to us all and when the family wanted sympathy for having to "put up with her" and what all THEY (not one like me but rather over 12) were going through, I gave it to them whole heartedly. While I may sound like I'm still angry, I'm really not anywhere as near as angry as I used to be. I'm 38, been through shit but I am not alone. There are many others who have been through worse, and at a lot younger age.
My husband made it through paramedic school and I'm happy to say that I would never, ever want his job. He is an amazing person and helps so many people. I am so lucky to have him, but I NEVER want to know the details of what he deals with. I'm such a number person! I'm also happy to say that I went for my second MRA which is clear (Thank you, GOD!) and am just happy to be alive right now. I am enjoying every moment with my two beautiful children, my wonderful husband and putting the past behind me. Again, I thank this site for helping me cope with so much!!!!
Update: 23 August 2009
I'm now 40 (dont' tell!) ... my mom passed 3 years ago this Thanksgiving. My children, now 5 and almost 8 are the backbone of my existence and my husband is my rock. Funny thing happened at my son's 7th birthday last year ... I met my now very best friend Liz who amazingly had a brain aneurysm almost 2 years ago in December of 2007, on the same day 29th as my mother did in 2001. Since I've met Liz, I've learned what friendship really is. No one is shielded and it's not all genetic when it comes to diseases. She had absolutely no history of it in her family but suffered virtually the same aneurysm my mom did, just got help a lot quicker. Liz has made a complete recovery from everything, and this re-establishes my belief that if you want something bad enough, you can try to work to make it happen. With her attitude, she got herself back.
I've grown so much! My kids are teaching me what life is all about. My husband continues work as a paramedic and I am enjoying my family. I'm getting checked regularly with MRA's despite the non-coverage by our insurance and am happy to say I'm at no risk currently. My husband's family still does not speak to us so I do not know how my mother-in-law has progressed since her hemorrhage and stroke but I believe that is what they wish it to be. I am no longer bitter and actually miss my mom on occasion, go figure. I've recently reconnected with a lot of friends on Facebook and am enjoying catching up.
My husband delivered a baby girl, my best friend saved a toddler's life with CPR and I once saved a life with the Heimlich Maneuver. My virtually sterile "sister" (cousin) gave birth to a beautiful baby girl this summer and I believe we are all here for a reason. I'm loving life right now with my two sons, my husband, my friends and my family. But, I also have this family to thank for so many things. Thank you, again and I continue to hope that I will be able to help someone here as you all have helped me.
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