TALK TO A
Established April 15, 1995
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23 October 1999
My father is a vigorous, brilliant man of 75. On August 2, 1999 he decided to cut a branch from a tree while my mother was at the store. When she came home, he was sitting in the kitchen, acting confused. He told her he fell. She called 911 and he was transported to the hospital. The doctor was suspicious about the story, because there was no evidence of a fall. He suspected a stroke or brain aneurysm. At first Dad was lucid, I even brought in the laptop to keep him busy. The angiogram pointed to an aneurysm, but there was so much blood, they needed to wait four days and retest, which they did.
My mother and I met with the surgeon, who explained the procedure for clipping the aneurysm and we signed the consent forms. My father signed too. Surgery was successful, lasting five hours. He was in the ICU for a total of three weeks. After surgery, he was sleepy and confused most of the time. When he was talking, he thought he was in WW II again. Sometimes, we could see the real man shining through, but most of the time he just slept, he showed no emotion. He was admitted to a rehab. center about 40 minutes from my parents' home, which meant my mother, also 75, was driving an hour and a half each day to be with him.
I have been very dismayed at the lack of understanding on the part of many (but by no means all) of the doctors and other providers concerning the impact of Dad's illness on the two of them as a unit. The doctors would make decisions without telling Mom first and would dismiss her concerns. My parents have been married for 52 years, they are each an integral part of the other. And the professionals who said cruel things, like, "well, he's old" when mother asks about his recovery progress, not only are insensitive toward my Dad, but my mother as well. My father has a web site, of his own making, for goodness sake!
The neurosurgeons have actually been the most sensitive and active in continuing to evaluate his condition as he heals. After he "left" WW II, Dad started talking as if he were in the 50's, then the sixties, and so on, now he seems more in the present, and recently has started showing emotion. He has been running a fever on and off, and he's been hospitalized twice for dehydration. My mother keeps asking the staff what to expect, and she's frustrated that no one can tell her. We find that my brother gets the most information out of the rehab. staff and doctors, that his questions are answered more completely than when my mother asks. Perhaps because he is male, perhaps because he is 6'4" and rather a commanding presence.
The narratives I have been reading are a Godsend to us. I am printing out several for her to read. I have been trying to teach my mother to use e-mail but I doubt I will get her to use the web, she is techno-phobic. My dad and I used to email each other every day! Through persistence, my mother manages to get the rehab. staff to see my father, not as a used up old lump, but a real human being. She gave the speech therapist and the psychologist copies of the book he wrote about his childhood, she puts pictures out of his family and of him, active and smiling. We see his dry sense of humor coming back. This has been a slow, slow process with many setbacks. He was moved to a veteran's facility but my mother took him out after just a week, because the staff kept referring to their patients as "these geriatrics" and "poor things", which my mother just could not tolerate--and the therapy there was not rigorous. The doctor agreed with the move, thankfully. The new unit staff has reassured her that they will be actively working with him, but she will continue to advocate for him. I certainly have had my eyes opened about the way people who are over 70 are treated!
Update 5 Nov 1999
I'm so discouraged about the rehab my Dad is not getting. Despite my mother's assertiveness, the present rehab center has pronounced that he's not making further progress and so Healthsource will no longer pay, so he's going back the the veteran's home at intermediate level, which means my parents now have to pay the full freight. I'm going up there this weekend to scope out the situation.
Dad's aneurysm occurred only 3 months ago, the narratives I read certainly suggest that 3 months is still early. And Dad is indeed making progress, mentally. He reports to my mother that he is dreaming, he shows emotion now, there are many subtle signs, but they are missed by those who do not take the time to sit with him. Fortunately, my folks are part of a wider community due to their church and neighbors and there is strong support for my mother there.
At the rehab. center where he is now, the social worker told my mother "we just don't think he's going to get any better." and encouraged my mother to talk to an elderly woman (85) with whom my mother "would have a lot in common" because she, too, had had a brilliant husband. Except that her brilliant husband died of an Alzheimer's condition. And the only thing my mother had in common with this woman was that they both had loving, brilliant husbands. Actually, the lady was very sweet and my mother enjoyed chatting with her, but she was so put off by the assessment of the staff that any possible support she could have received, disappeared. She said she realized that the staff thinks she's old, too!
I am beginning to look for literature on neuropsychology, I want to understand more about what happens in the brain after an injury, so if you have good reading to recommend, could you send it along?
Update 16 Nov 1999
Dad was in a "better" rehab for 10 days, then they announced he wouldn't get any better and arranged for a transfer--I think you heard all that. A few days before he left there, the nurse practitioner told my mother that they wanted to put a hole in his stomach to feed him, it would mean an overnight hospital stay, then a transfer to the new facility, the Maine Veteran's Home. She said he needed it because he wasn't eating, the staff had to feed him, he had gotten dehydrated again, not to worry, it would just be for supplemental nutrition, he would still get meals during the day, etc. etc. So my mother agreed. It was to occur on a Monday, she would go to the hospital, meet the surgeon and sign the consent forms.
On Saturday, I went up to see her and scope things out. After talking to her long into the night on Saturday, and seeing him earlier in the day, I convinced her to say no to the procedure. He was transferred to the Maine Veteran's Home on Monday, with no additional surgery. He almost immediately started to eat, by himself. By Wednesday, he was consuming entire meals and looking for more. He has improved dramatically in his alertness and speech. He is too weak to walk, yet, but he has started to try to get out of his chair on his own.
I won't go into all the details of how mad I am and why concerning the "better" rehab, but I am forming some opinions. I have also corresponded with a woman in Florida who's mother is now in a so called sub acute home, and the daughter is feeling much better about it. First, mental stimulation is good, but noise is bad, bad bad. My father deteriorated while in the hospital and then in the rehab due, I think, to the clatter of computers and a very loud roommate, a constant television in his room, as well as lights on all day and night. I am certain the constant noise and presence of light is a detriment to the healing brain. The Maine Veteran's home has a more pod like environment, much smaller, no long halls, much quieter based on my tour. Second, I think my father was neglected in the rehab and was starting to die from failure to thrive, just like unloved and unheld infants fail to eat and gain weight. The staff was feeding him, which he hated, he had always consumed his food under his own steam before, but they did not want to wait an hour for him to eat. As a result, he became dehydrated ( again) and undernourished, less able to do rehab., so they concluded he would not progress. Fortunately, we moved him!
The lessons I am learning are intuitive, not scientific, but I will try very hard to make sure that Dad is not subject to meaningless background noise and also, that he sleeps in darkness. He has a new roommate who is a doctor. I think they two men were placed together on purpose, because my mother and this other man's wife are very compatible. She reads the newspaper to her husband. There is no tv or radio in the room. (an aside, we were not allowed much tv as children. we lived on an island in Lake Ontario, with just our own family--though connected to the mainland by a bridge, we were really isolated. Once, Dad took the plug off the tv because my brother brought home bad grades, so we went one whole marking period without any television at all and it was not available at all during the summer) Also, the sense I have from looking at the Vet's home and talking with people there, is that the staff has a clear mission.
The people in the home are all veterans, many with war time experience. There are affirmations of their worth all over the home--flags, eagles, big thank you cards from area school children (veteran's day was approaching), patriotic posters, all reminders of their service to their country. Art on the walls, a cockatiel walking around in the living area, no, it's not home, but it's very close. My Dad is a WW II vet, but never spoke of his service much, it hasn't been a defining theme in his life, but at this time of his life, this recognition is most appreciated. And I think it spills over to the staff in a very positive way. My dad is not just a little old guy in a wheelchair, but an Army Air Corps navigator who flew missions over Germany and was shot down over England by pursuing enemy fire (or Englishmen with a bad aim, who knows).
Sorry this is so long. I'm hoping that my thinking "out loud" to you will help in forming your own theories. I know we cannot "think" our parents out of their dilemmas, but but developing working hypotheses we can impact the quality of their lives. On another note, on this coming Friday, I am meeting with the family doctor in Augusta, with my siblings. I have a chart with the dates of all of his moves from the date of his admission to the hospital, to the latest admission. I intend to review the chronology with this doctor, who has not seen him consistently during the past three months because he doesn't serve the rehab centers. Then, I am going to review the progress and the backsliding, tell him the positive and negative aspects of each placement. Then, I am going to tell him that I am gathering all of Dad's medical records from every facility and ask him to recommend a neurologist to review the records and provide a consult.
Update 23 Nov 1999
I met with my father's family doctor yesterday (actually an internist, not a family physician) with one of my sisters and my brother. We reviewed his care, asked questions, etc. and let the doctor know that, with my Dad in a facility we like (Maine Veteran's Home) and with the doctor's consistent observation, we hoped to maximize Dad's physical health and healing with no more crises and then look again at the long term after the next six weeks have passed. And no one is to make speculations about Dad's prognosis until we have 6 weeks of optimal nutrition and hydration.
These are the main issues, hydration and nutrition - Dad gets dehydrated, slides backward for a week, rehab gives up, he gets an IV, gets better, goes to a new facility, starts the same cycle over. He eats well, then poorly. The swallowing evaluation which involves a barium swallow has never been done, though each facility assumes it has been done. So, it has now been ordered, then, if there are major problems, we will agree to the insertion of a feeding tube. He's lost about 20 pounds since the beginning of his ordeal (in other circumstances, a loss he would be pleased about!).
As far as therapy, I hope the emphasis will be on recreation, strength, speech, and walking. I am going to hire an art therapist to work with him twice a week. Once with him alone, once with him and with my mother together. After the meeting we saw him. My sister sat with him, showed him photos. He wrote on the back of each, identifying the place. He issued several cogent, sharp, one-liners. He is speaking in allegory, I swear. Said he was the king sitting on his throne (the wheelchair). He is taking Ritalin in the morning, which seems to help him, and contact with people draws him out. He writes, draws, and regards us with affection. And a bit of irony, too. My mother said, "isn't is nice to have some of your kids here?" He surveyed the three of us, the youngest age 45, and said, "These are kids?" So, we love what we have, and appreciate that the essence of my father is still there, he can make the room laugh, scold with a look, form a philosophy.
The physiatrist is prone to making prognosis, this past Wednesday he told my mother, "he isn't likely to make much more progress." My brother is going to meet with this man next Wednesday and try to convey to him what harm he causes our mother when he makes statements about the future. By the way, I printed out eight or ten narratives for my mother the techno-phobe, and she is now referring to them and returning to them for comfort.
Update 1 Jan 2000
I have returned from a Christmas trip to my parents' home, and I have excellent news to report. My father's mental condition is close to normal, insofar as I can determine, with a few interesting sidelights. He's sharp, he's funny, he has the same prodigous memory he always had, but he's so, so frail that the grandchildren were all shaken to see him (only one grandchild, my daughter, had seen him previously) In two weeks or so, barring complications, he will be home permanently. Now it is as if he is recovering from physical illness, with the attendant weakness, fatigue, confusion and so forth that accompany any serious injury. He will require nursing care at least a few hours a day, he needs help with walking and hygiene.
While he was at home, visiting, my son sat with him at his computer. He was dismayed to have forgotten so much in five months, but he started to get it back, so much so that he signed on, checked his email, read all the trashy email subject titles out loud (to my discomfort) and printed one email that was for business. All with very little assistance.
We have learned so much, but the important elements that I hope everyone who reads this takes away is this---never, never give up. Never stop questioning, never stop hoping, planning, and talking as if there will be improvement. Always expect caregivers to give your patient the best care as if he were their own and question every statement, every decision, every treatment plan that does not make sense to you. Do it politely, do it in writing, do it any way you feel comfortable, but make sure they know you are there. This has been vital to Dad receiving treatment, and the right care.
I am not suggesting that one ought to hold unrealistic hope, but we have found that none of the caregivers are able to prognosticate accurately. They have no knowledge of the man before the aneurysm, no knowledge of what we consider, as a family, the essence of his being, or what he considers, himself, to be important. We are grateful for Dad's return to awareness. I wish there were more art, more creativity in the process of his healing. The nurses and therapists tell us that his lapses into "work" or delusion, are evidence of injury, and they are quick to bring him back to reality by telling him where he is and what he's really doing. I think that's misguided. He says, for example, "there are sharks under the bed." Well, there are sharks, metaphorically, big, bad sharks, in my view. Once, when corrected about a misstatement, he said, "I'd rather have a headful of wrong ideas than a head full of blood." He's using fantasy, imagination, "work talk" to keep away the night, if you will.
He refers to the nursing staff as "my secretaries" and when corrected (he knows well who they are) he says, "well, they keep track of me all the time, and they write all the time, I'll call them what I want." OK. So, the adventure continues. I'm anxiously awaiting my first email from him when he finally goes home.
Update 8 Feb 2000
My Dad is home, he returned home a week ago, and several days later I got my first email in six months from him. His spelling stinks, but it sure was great to hear from him. As an aside, my mother has now acquired email skills, too after months of hard work on her part. I should have realized the same spirit that wouldn't allow her to give up on Dad would eventually drive her to conquer email!
Dad is physically frail, but mentally on his game except when he's tired. My younger sister spent five days with my folks after Dad's return home, then I spent the weekend with them, went with them to church, he using a walker. Dad's recovery has been slow but steady, very different from the recoveries of younger people, in terms of the time it has taken to get where he is. Folks at the last nursing home credit my mother for attending to his recovery with such persistence and determination.
As is so often said in these narratives, don't give up.
Update 12 Apr 2000
My Dad continues to make progress, now in the 9th month since the aneurysm. Mother was having a battle with him over his refusal to use his walker; he just gets up and walks around on his own and sometimes falls when his feet get confused. I threatened to hook up the motion detector he uses on the racoons when the corn is ripe (they are "killed" with awful music and lights as soon as they trip the devise). The situation seems to be resolved, he's not falling anymore. Note that he got his way. Always does.
Update 7 Dec 2000
I've been waiting for awhile to give an update of my dad's condition, to make sure he's stable at his new level, and he is! Dad was 75 when he had an aneurysm bleed and now he's nearly 77 - about 16 months have passed, hard to believe. Anyway, he's been home with my mother since February, and there have been many ups and downs, due to urinary tract infections, largely, which make him very dopey. He's quite mobile - uses a cane outdoors, but otherwise, he goes where he wants (when he wants). In August, he was started on a small dose of anti depressants.
Some time in September, I went to visit and when I walked in the house, he looked at me, and I mean the real dad looked right at me, with his old expression - and it's been getting better ever since. He's funny, he's interested in life again, going to the senior center, cracking awful jokes, enjoying company - full of future plans and opinions. Voted for Bill Bradley for president as a protest vote against all the others. He still can't drive, and probably will not, due to the small stroke he had which has impaired his awareness on his left side. He got out his trombone and he's practicing. He can raise a fair tone - it's really good exercise for his lungs, I think.
Biggest problems are boredom which results in eating bad food too often, and incontinence from time to time. His short term memory is iffy, but his long term memory is very much intact. He is frail and I suspect always will be, which is hard for him to accept, he was a very vigorous guy. But his brain is going strong and he's enjoying his life, and we are enjoying him. When he is physically well, he makes a small amount of progress every single day, and some days he makes leaps.
I have said before, never, never, never give up. Thanks for this site and all the wonderful people who provide advice and support and prayers - I don't know what we would have done without all of you.
Update 25 Jan 2001
Dad, as always, is improving slowly over time. Mom took him to get a driver's test, which he did not pass, but the tester was wonderful (it wasn't a road test, but a physical test of some sort) and explained that it wouldn't be wise for him to drive "just yet" as he does not look to the left. Ever. But she was respectful and gave him hope (and me a bit of a shudder--he was a terror when he was well!)
Then, Mom took him to the eye doctor, who treated him as if he wasn't there, and said as an aside to my mother (in Dad's presence, of course) "Well, thank God he'll never get a license again!" Guess whose head got bitten off!
Update: 30 Jun 2002
My father continues to recover, nearly three years after his aneurysm. He now walks without a cane, though he tires easily. His judgment can be a little odd; he ordered an exercise machine over the phone with mother's credit card - $1,200 - and later my brother found him "stuck" in it - we've hidden it. He ignores his diet. He cannot, to his constant frustration, remember how to use the internet. He can, however, use the digital camera and print photos without help.
He's 78. He's physically weaker than he was 3 years ago, but the quality of his life is still high, and his family still remains grateful for every day we have with him
Update: 4 March 2006
Back in 1999 I turned to this site for help and support as my 75 year old father had suffered a brain aneurysm and we were all struggling to cope. The site was a huge help to me. Well, here it is, 2006, and my dear father is 82, still living and still at home.
We've moved my parents to be closer to our brother; Dad is frail but sharp. Two years ago a VA doctor suggested a shunt, but after further inquiry, Dad decided not to proceed. The neuro-surgeon had not been encouraging. I'm wondering if other survivors have faced this issue years after the original injury.
Dad's increasing brain pressure causes incontinence, a shaky step and some sleepiness, but it comes and goes. We were told there was a risk that he would either stay the same or get much worse - -since that time, he's stayed about the same. Now and again the subject comes up again and we wonder if we're depriving him of a chance to walk freely and stand straight.
Update: 26 November 2007
When my father suffered a ruptured aneurysm eight years ago, I turned to this site for support, information and comfort. Now I am writing to close this chapter of our lives.
My father, Richard Billings, passed away yesterday, November 15, at the age of 83. His passing was in peace, and in his home, as he desired. He fought the good fight for many years, retaining his dignity, autonomy and independence against medical and social forces that would have taken everything he had, including his liberty and right of self-determination, were it not for his stubbornness and our united front against the "put him in a nursing home" mentality we encountered at almost every turn. In the end, it was his heart, not his head, that failed him.
© Copyright 1999 Marilyn
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