Oh, I don't mean that literally. It's just that sometimes, you do feel the urge to strangle them because they have an excuse (finally) for only remembering what they want. My hubby is no exception to that rule. He IS a Type A personality and I understand how difficult it is for him NOT to feel in control of his life and all that happens. I happen to be a Type A female myself but....I am also a Cancer, very family oriented and I just HATE conflict of any sort. Especially if it upsets the family *balance*. It makes life very difficult for me most of the time when the Beast (as most of us call him these days) is feeling the most out of *control*.
The past couple months have not been fun for either of us. He started having a problem with his bladder a while back. I could tell at night when he got up to pee because of the strange amount of time it would take him and the sound of his stream wasn't right. It was kind of off-and-on. I figured he might be having a problem with either his prostate or his bladder but knew I would have to wait for him to acknowledge it before I could even offer suggestions. Then, while making the trip up to one of our son's homes to have a repair made to a nephew's laptop, he stopped at Mickey D's to grab a bite to eat, went to the bathroom and had both blood and clots in his urine.
He was on the phone with me immediately and actually ASKED me what he should do. Should he come back home (he was about halfway to our son's house) or what? I told him that it wouldn't be until later in the day before he could get into the doctor's anyway unless he wanted to go to the emergency room (which he didn't) so he might as well continue to our son's and I would call the doctor and then call him back. So continue he did.
The doctor saw him late in the afternoon so he was able to get the laptop repaired and make it home in plenty of time. Our son lives about an hour and a half's drive from us so it's not a big deal. His doctor immediately had his urine tested in the lab there at the office and said he suspected a bladder tumor. He referred him to a local urologist and, to make a long story short, it was, indeed, a bladder tumor. Cancerous. But a class one which is not aggressive but means he has to have that awful camera thingy put up his dangle down every three months for the rest of his life, I assume.
The surgery went well but the Beast had to be catheterized for a WEEK. THAT part was
absolutely the worst week in BOTH of our lives. I felt bad for him because I knew he was in pain but he almost refused to take the pain pills until I was ready to kill him for all his whining. The pain pills, you see, made him so groggy, he didn't feel in CONTROL. That was unacceptable. I was ready to take them myself just because HE was such a pain in the ass because HE wouldn't take the damn pills!
He DID survive (and so did I) and got better gradually. Then he has another problem. This time with his EYE, of all things. So I make an appointment with the opthalmologist and it seems his lower eye lid is turning inward and the lashes are lacerating his eyeball. That meant outpatient microsurgery but it couldn't be scheduled for a week. The doctor instructed him on how to apply the tape to pull the eyelid outward until the surgery could take place. Of course, the Beast didn't like HAVING to do anything that might make people stare or felt uncomfortable. So, you can imagine what took place. He was absolutely miserable to be around. I kind of blew off his complaints because he *asked for it* by not following the doctor's instructions. By the time his surgery was performed, he was really miserable, the eye was very inflammed and causing him a lot of pain and he hadn't slept well for a few days.
He was supposed to just get an IV drip with something to relax him and a local for the surgery itself. Being overtired plus having some very definite brain damage from the strokes he suffered, he kept falling asleep, jerking awake and then was very confused about where he was and what was being done to him. The surgery required him to be very still so the doctor finally ordered the anesthesiologist to knock him completely out. I could understand the reasoning and even could have predicted the problem when the anesthesiologist and the doctor (separately and at different times) explained it to me. It actually was the first time the Beast had been under a general anesthetic in his whole life and he was not aware of the effects. THAT was fun for me, too.....LOL
So, when he was finally brought back to his room, I kept having to nag at him to breathe through his nose and breathe OUT his mouth to get rid of the effects. When he was finally aware and could pay attention for more than five seconds, he got the message that he wouldn't be able to go home until his O2 level was above 96 (it was at a dangerous 85 when he was brought out of recovery and he had to be put on oxygen in the room). He spent two days having to be told repeatedly about WHY his throat hurt and WHY his mouth was sore. Double whammy for me with his strokes and his lack of experience with a general anesthetic.
He is now feeling a lot better at both ends, thank God, or I might have been scouring the area for poison mushrooms to add to his food. (Only kidding, folks but I am sure many of you have had the same feelings for your spouse from time-to-time over the years). I am just glad that he seems to be almost back to his normal (if miserable) self. He really hates having been forced into retirement by his strokes and now he feels that he is dying in bits and pieces. I try to tell him that you are only as old as you let yourself feel but I don't think he believes me. Especially when he looks in the mirror.....LOL. I know the feeling but refuse to let myself be swayed by that old person that follows me around from mirror to mirror. She's just trying to make me feel bad. *grin*
That's where I am right now. Not a caregiver at the moment but poised for it. We've been lucky so far but he's already beyond the point where the doctor's gave him to survive. He's already smoking like a chimney (again) and using lard and other bad products to fry stuff up for himself. He's also fooling around with his meds since he thinks *he knows his own body better than the doctors*. I told him that if he has another stroke, I cannot deal with it again. I WILL put him in a nursing home and, although I know he believes me, he still continues to screw around and not listen to the doctor.
Am I alone in feeling this way? I sure hope not. He was so mean and ugly to me, although he was always sweet and making jokes with everyone else. I tried to understand why (and I think I did, really) but I am beyond being patient and understanding about it now. Life is too damned short for anyone to be mean to a spouse or a family member that is being supportive. I love him but......I don't always like him. *sigh*
Saturday, September 27, 2008
Monday, June 23, 2008
Caregiving Part 2, Part 3 and Years Later
I'm ashamed to say that I started these posts a couple years ago when my job as caregiver was actually much more relaxed and my husband was better. Oh, his temperament also improved. I think it was mainly because he finally realized his limitations and I didn't make a big deal out of them. I still automatically do some things and I encourage him to rest when he's overdone himself. He STILL does that and I just accept the fact that he finds it hard to feel he can't do what he wants all the time. He just knows he can't do some things for very long. He has to stop and rest or at least take a break.
But the difficulties of caregiving are still with me and I try to give encouragement to others who find themselves in the same situation. God knows it was offered to me back when I needed it and it only seems fair to pass it on to others. It doesn't matter if their spouse, parent or child has had a stroke, heart-attack, is going through chemotherapy or some other situation that you have to just suck it up and do whatever must be done. It's hard. It's emotionally debilitating. Even worse, it's hard to find some *me* time and you need that time just to regroup and be ready for whatever trials are ahead.
You also have to be able to be believably encouraging. You must believe that there WILL be improvement, there WILL be better days ahead or you won't be able to help the patient. You also have to know when to let them try to do things for themselves. You have to be able to see them try and try and even fail at times. That's more difficult than I can tell you. It's kind of a *tough love* thing. You do it because you MUST. You cannot protect them from their need to try to do things for themselves because that is the only way THEY know things are getting better. And, for heaven's sake, learn to use your sense of humor whenever possible. That can be a challenge since most times nothing is really humorous to you when it's someone you love. But you CAN learn to laugh and make light of things and even to encourage them for small accomplishments. Sometimes they don't see things they have done because it's not all they WANTED to do.
I would also encourage laughter around them in any form you can muster. A funny movie they can or did enjoy. Friends that have the right attitude and can talk about good times you have had together and how they look forward to more of the same. If you have an animal, cat, dog or otherwise, don't keep them away. They seem to have a sense for illness and recovery and it can do wonders for the patient to just have an animal curl up in their laps or next to them for a while. Let the children visit. Sure, they may have questions but answer them briefly and honestly.
I think the saddest thing that happened after my husband's stroke was that I didn't encourage my granddaughter more to be herself around her grandfather. We had been raising her most of her life and had custody of her. She was always very affectionate and loving towards him before he had his strokes. Perhaps because she was there when it happened and didn't understand his debilitation afterwards, she became distant and never hugged him again that I ever saw. I know he missed that and it saddened me. When I attempted to talk to her about it, all she ever said to me was that *he smelled like he was dying* and that was that. It was very sad. It took years for her to get over that but, by then, she was dating and working and becoming independent.
I think he tried to compensate for whatever it was he felt because she got the best of everything. I think that was probably a bad move on our part because she started to expect whatever she wanted like we were still bringing home a lot of money. We all had gotten a bit spoiled when we owned our air conditioning company. We DID make a lot of money. But now that the business was sold to our former employees, that income was gone. The money we had, we had to conserve for whatever the rest of our lifetime might be. We still bought her all the special shampoos and rinses she wanted, the food she liked to eat and snack on. We paid for her cell phone. She had a new computer every couple of years, the best monitor, sound system and a nice car. It wasn't new but it was only three or four years old when we bought it for her.
Yet she never hugged her grandfather again. I always noticed and realized I failed to sit down with her and explain all I knew about a stroke and recovery. She only visited him once or twice while he was in the rehab center. I just couldn't turn my attention to her because I didn't see it until too late. He took all my time and energy with nothing left over for a long time. He spent over a year in rehab. First as an inpatient for several months (almost 9 total because of his second mini-stroke six months after the first one) then as an outpatient until they felt he had pretty much recovered as much as possible. After that, it was MY problem.
It is now just two years since I wrote the first two blogs you will find here. I wrote those late at night when I just felt this compulsion to admit to my frustrations and fears. You have them no matter for whom it is that you must become their caregiver. There are chats for caregivers. Find them, use them, they can be a real lifesaver. More on this in a later post.
It is also now six years since my husband's strokes and he is definitely a survivor. The doctor said he might live five years and he's broken that prediction. Heck, he'll probably outlive me now (insert laughter here). Do I still act as a caregiver? Yes, but now it's differently. I will tell you more about that another day. Suffice it to say, the job never ends but it does become easier and easier as time goes on. Do I have concerns? Yes. Are some days frustrating? Yes. Are some days good? Definitely. But I can now sleep well at night and no longer worry about waking up next to him and finding him dead. If he needs me, I will awaken and I know what to do. That is the greatest gift I have received. I know I won't panic and I will find the strength to deal with whatever happens. I did it once and I can do it again if necessary. I just pray I won't have to because I am not sure HE could deal with it again.
But the difficulties of caregiving are still with me and I try to give encouragement to others who find themselves in the same situation. God knows it was offered to me back when I needed it and it only seems fair to pass it on to others. It doesn't matter if their spouse, parent or child has had a stroke, heart-attack, is going through chemotherapy or some other situation that you have to just suck it up and do whatever must be done. It's hard. It's emotionally debilitating. Even worse, it's hard to find some *me* time and you need that time just to regroup and be ready for whatever trials are ahead.
You also have to be able to be believably encouraging. You must believe that there WILL be improvement, there WILL be better days ahead or you won't be able to help the patient. You also have to know when to let them try to do things for themselves. You have to be able to see them try and try and even fail at times. That's more difficult than I can tell you. It's kind of a *tough love* thing. You do it because you MUST. You cannot protect them from their need to try to do things for themselves because that is the only way THEY know things are getting better. And, for heaven's sake, learn to use your sense of humor whenever possible. That can be a challenge since most times nothing is really humorous to you when it's someone you love. But you CAN learn to laugh and make light of things and even to encourage them for small accomplishments. Sometimes they don't see things they have done because it's not all they WANTED to do.
I would also encourage laughter around them in any form you can muster. A funny movie they can or did enjoy. Friends that have the right attitude and can talk about good times you have had together and how they look forward to more of the same. If you have an animal, cat, dog or otherwise, don't keep them away. They seem to have a sense for illness and recovery and it can do wonders for the patient to just have an animal curl up in their laps or next to them for a while. Let the children visit. Sure, they may have questions but answer them briefly and honestly.
I think the saddest thing that happened after my husband's stroke was that I didn't encourage my granddaughter more to be herself around her grandfather. We had been raising her most of her life and had custody of her. She was always very affectionate and loving towards him before he had his strokes. Perhaps because she was there when it happened and didn't understand his debilitation afterwards, she became distant and never hugged him again that I ever saw. I know he missed that and it saddened me. When I attempted to talk to her about it, all she ever said to me was that *he smelled like he was dying* and that was that. It was very sad. It took years for her to get over that but, by then, she was dating and working and becoming independent.
I think he tried to compensate for whatever it was he felt because she got the best of everything. I think that was probably a bad move on our part because she started to expect whatever she wanted like we were still bringing home a lot of money. We all had gotten a bit spoiled when we owned our air conditioning company. We DID make a lot of money. But now that the business was sold to our former employees, that income was gone. The money we had, we had to conserve for whatever the rest of our lifetime might be. We still bought her all the special shampoos and rinses she wanted, the food she liked to eat and snack on. We paid for her cell phone. She had a new computer every couple of years, the best monitor, sound system and a nice car. It wasn't new but it was only three or four years old when we bought it for her.
Yet she never hugged her grandfather again. I always noticed and realized I failed to sit down with her and explain all I knew about a stroke and recovery. She only visited him once or twice while he was in the rehab center. I just couldn't turn my attention to her because I didn't see it until too late. He took all my time and energy with nothing left over for a long time. He spent over a year in rehab. First as an inpatient for several months (almost 9 total because of his second mini-stroke six months after the first one) then as an outpatient until they felt he had pretty much recovered as much as possible. After that, it was MY problem.
It is now just two years since I wrote the first two blogs you will find here. I wrote those late at night when I just felt this compulsion to admit to my frustrations and fears. You have them no matter for whom it is that you must become their caregiver. There are chats for caregivers. Find them, use them, they can be a real lifesaver. More on this in a later post.
It is also now six years since my husband's strokes and he is definitely a survivor. The doctor said he might live five years and he's broken that prediction. Heck, he'll probably outlive me now (insert laughter here). Do I still act as a caregiver? Yes, but now it's differently. I will tell you more about that another day. Suffice it to say, the job never ends but it does become easier and easier as time goes on. Do I have concerns? Yes. Are some days frustrating? Yes. Are some days good? Definitely. But I can now sleep well at night and no longer worry about waking up next to him and finding him dead. If he needs me, I will awaken and I know what to do. That is the greatest gift I have received. I know I won't panic and I will find the strength to deal with whatever happens. I did it once and I can do it again if necessary. I just pray I won't have to because I am not sure HE could deal with it again.
The Truth About Caregiving
Someone emailed me some links for chats of other caregivers for people who had strokes and I have to tell you that it was the best thing anyone could have done for me.
I was so conflicted about my feelings and what was going on with my husband that I NEEDED to talk to other people who were going through or had gone through the same thing. It made a huge difference in how I looked and treated everything after that.
I found out that the traits are pretty much the same with survivor or Type A personalities. My husband was definitely a Type A personality. It must be something that Mother Nature or God, depending on your personal beliefs, bestows on those who WILL survive if they have anything to say about it.
I know it was a struggle each and every day for him to do everything. To hold a phone, drink a cup of water or coffee, even to sit up was a challenge. I WILL say one thing, he tried to meet it with a sense of humor most days. I think I was the only one he ever acknowledged his weakness to and THAT was the reason he could and would be so nasty to me. I KNEW his weakness and he hated that he needed me to just know that he wasn't as brave or as sure of things and yet resented that I KNEW. I'm not a psychiatrist or trained to work with people in his situation but I am a woman, a wife who loves her husband and try very hard to meet the needs of those I care about. So I learned to just *let things go* and choose my fights. If he was having a difficult day, I let him vent and just took care of his needs on a daily basis.
I think the hardest thing for me to learn was to NOT be overly protective of him. When he felt he was ready to do certain things or even when he wanted to just TRY, I had to let him. It was often the most difficult part of my life each day.
I was constantly worried about almost everything he did...when he tried to get himself into his wheelchair, when he wanted to go to the bathroom by himself, even putting on his own shoes or socks. I was afraid for him...mostly of him failing and becoming depressed. What I hadn't thought of was how he felt about being treated like a child. It was humiliating for him. He did not want a keeper; he wanted to do all the things for himself that he could before the stroke. He needed my help for most everything but he hated it.
I felt awful because I was up late most nights not because I really HAD to be but because I was afraid of going to sleep and his having another stroke while I slept next to him. I was so tired all the time and scared to death that I might sleep through a time when he needed me. It was the worst time I remember having in my life. I was terrified that I would wake up one morning and find him dead in our bed.
At least talking to others who were in my situation, I discovered that my fears were not unusual. When I talked about the night I woke up in a wet bed and was so releaved to find out he was just so tired that he dreamed he was using the bathroom, half the people in the chat laughed. They had all gone through it. I related how I had to wake him to get him into dry underwear and used beach towels under the clean sheets and then stayed awake because I was half afraid this was more than it seemed. I am surprised I didn't have a nervous breakdown because it seemed like that was what I was doing....trying to hold myself together because HE needed me and so did my granddaughter and I couldn't fail them.
THE HAIRCUT
I think the turning point was when I got THE haircut as my granddaughter called it. I was very tired and feeling unattractive but....friends were going to visit my husband and have lunch with him so I was meeting with my sister for lunch.
This was a TRUE luxury for me and as I drove to the nearby convenience store for some fresh bread and milk, I spotted this beauty salon and their sign that said *Walk-ins Welcome*.
I decided then and there that I was going to do something for myself and get a haircut that didn't require a lot of care. So I walked in and said to the receptionist....."I need a style of haircut that doesn't require a lot of fuss. Who is the best person here to do that for me?"
She looked at me and said, *I am* and gave me a nice haircut, although shorter than I imagined, and I felt wonderful! My sister loved the look and knew just why I had done it. We had a great lunch, a few drinks and I was ready to face the world with a happy heart for the first time in a couple months. It's amazing what a stupid thing like a haircut can do for a woman.
I was so conflicted about my feelings and what was going on with my husband that I NEEDED to talk to other people who were going through or had gone through the same thing. It made a huge difference in how I looked and treated everything after that.
I found out that the traits are pretty much the same with survivor or Type A personalities. My husband was definitely a Type A personality. It must be something that Mother Nature or God, depending on your personal beliefs, bestows on those who WILL survive if they have anything to say about it.
I know it was a struggle each and every day for him to do everything. To hold a phone, drink a cup of water or coffee, even to sit up was a challenge. I WILL say one thing, he tried to meet it with a sense of humor most days. I think I was the only one he ever acknowledged his weakness to and THAT was the reason he could and would be so nasty to me. I KNEW his weakness and he hated that he needed me to just know that he wasn't as brave or as sure of things and yet resented that I KNEW. I'm not a psychiatrist or trained to work with people in his situation but I am a woman, a wife who loves her husband and try very hard to meet the needs of those I care about. So I learned to just *let things go* and choose my fights. If he was having a difficult day, I let him vent and just took care of his needs on a daily basis.
I think the hardest thing for me to learn was to NOT be overly protective of him. When he felt he was ready to do certain things or even when he wanted to just TRY, I had to let him. It was often the most difficult part of my life each day.
I was constantly worried about almost everything he did...when he tried to get himself into his wheelchair, when he wanted to go to the bathroom by himself, even putting on his own shoes or socks. I was afraid for him...mostly of him failing and becoming depressed. What I hadn't thought of was how he felt about being treated like a child. It was humiliating for him. He did not want a keeper; he wanted to do all the things for himself that he could before the stroke. He needed my help for most everything but he hated it.
I felt awful because I was up late most nights not because I really HAD to be but because I was afraid of going to sleep and his having another stroke while I slept next to him. I was so tired all the time and scared to death that I might sleep through a time when he needed me. It was the worst time I remember having in my life. I was terrified that I would wake up one morning and find him dead in our bed.
At least talking to others who were in my situation, I discovered that my fears were not unusual. When I talked about the night I woke up in a wet bed and was so releaved to find out he was just so tired that he dreamed he was using the bathroom, half the people in the chat laughed. They had all gone through it. I related how I had to wake him to get him into dry underwear and used beach towels under the clean sheets and then stayed awake because I was half afraid this was more than it seemed. I am surprised I didn't have a nervous breakdown because it seemed like that was what I was doing....trying to hold myself together because HE needed me and so did my granddaughter and I couldn't fail them.
THE HAIRCUT
I think the turning point was when I got THE haircut as my granddaughter called it. I was very tired and feeling unattractive but....friends were going to visit my husband and have lunch with him so I was meeting with my sister for lunch.
This was a TRUE luxury for me and as I drove to the nearby convenience store for some fresh bread and milk, I spotted this beauty salon and their sign that said *Walk-ins Welcome*.
I decided then and there that I was going to do something for myself and get a haircut that didn't require a lot of care. So I walked in and said to the receptionist....."I need a style of haircut that doesn't require a lot of fuss. Who is the best person here to do that for me?"
She looked at me and said, *I am* and gave me a nice haircut, although shorter than I imagined, and I felt wonderful! My sister loved the look and knew just why I had done it. We had a great lunch, a few drinks and I was ready to face the world with a happy heart for the first time in a couple months. It's amazing what a stupid thing like a haircut can do for a woman.
It Started with A Stroke
It started with a stroke.....
Oh, it wasn't mine. My husband took my daughter and granddaughter to see the movie Lord of the Rings, the Fellowship of the Ring. I stayed at home because I had a case of the flu. They had only been gone about an hour when I got a hysterical phone call from my daughter (who has a tendency to over-react to most anything) saying she thought her father was having either a heart attack or a stroke. I made sure she used the cell phone she had taken from her dad to call 9-1-1 and told her I would be right there.
I quickly dressed, jumped into my car and headed to the theater that they had gone to and was shaking all the way. My husband of 38 years was obviously ill and I was scared to death that it might be fatal before I could get there. I called his cousin and best friend to let him know that something had happened because *I* needed the support at the time.
When I arrived at the theatre, the ambulance was loading him into it and the paramedics tried to stop me. I later realized they just didn't want a hysterical woman making things more complicated but I was too savvy to be hysterical. What concerned me was whether or not he had a stroke or heart attack. Once they determined I wasn't going to make things worse, they let me get into the ambulance and I realized my husband was in the grip of a right-side brain stroke. His left side was paralyzed and he kept asking me to find his left arm. I said a silent prayer of thankfulness that he hadn't had a LEFT brain stroke, which would have involved the speech center of his brain and left him speaking gobblydegook to the rest of the world. Since I knew him best, I knew that it would have frustrated him more than the paralysis.
His cousin, Butch, met me at the hospital and helped me get my daughter and granddaughter home. When we realized that we couldn't get into the emergency room with my husband while they were trying to determine how severe the stroke actually was, we went and brought my husbands truck home and came back to wait it out until the doctors knew how bad things were.
In reality, my husband had been more fortunate than most because the city he had his stroke in was an upscale community with an advanced life support vehicle that answered calls like the one they got from my daughter. They had a medication onboard called *TpA* that helped stop the damage of a stroke if administered within 45 minutes. As we later learned, he had actually suffered a brain stem stroke and most patients either died or became vegetables. I can't even begin to tell you how many doctors and nurses came to see him during his recovery because they had never seen a functional (well, almost) patient who had lived through a stroke of his calibre.
Now I was extremely grateful he lived through this. However, no one prepared me for what I was about to go through so I wanted to share some of this with people who have no clue. First of all, my husband never suffered ANY pain during this so he was as clueless as the next person as to what happened to him. A stroke is painless. The symptoms are incidious and are usually passed over as just a highly stressful period with a nagging headache that borders on migraine just due to it's duration. Oh, there are other symptoms but that is the one that my husband suffered from...a nagging headache that would ebb at times but never went away. Please either google or webmd.com the word *stroke* and read the symptoms. If you are over 50, have high blood pressure THAT YOU KNOW ABOUT or are in a high stress business, make yourself familiar with the symptoms of an impending stroke. We had NO clue.
When we were finally allowed into the emergency room, my husband kept asking us to find his left arm. He really had no clue what had happened to him AND that whole first week after his first (yes, I said FIRST) stroke, he has very little memory of even after four years. He was very upset to find himself in the hospital because he had no memory of pain, only a malaise and a desire to lay down and rest.
The doctor met with me after the lab and xrays were done. They had tried to do an MRI but my husband became almost violent when they put his head in a kind of face mask in an attempt to keep his head still. However, the normal xrays clearly showed an *incident* and a punch mark (it's all I can call it) that was probably an 1/8" across. It looked like someone had pounded a 3 penny nail into his brain stem and pulled it out. I almost fainted at the sight of it when the doctor explained to me what had happened. At that time they had no clue as to how extensive the damage to the brain was since they couldn't do an MRI until he calmed down.
Let me tell you a bit about my husband. He is definitely an ALPHA personality. He prefers control. I am also an ALPHA female so our marriage was always *interesting* to say the least.
He has always felt he could *tough it out* when it came to being ill. This was going to be a real test of that.
His doctor told me that the same thing that led to the stroke (my husbands personality) was also what helped him recover. I believe that. He has always had a real stubborn streak and a determination not to let anything defeat him. Even during that first week, he tried several times to just * tough it out* and go to the bathroom by himself since he hated those little urinal things they give men in a hospital. It led to some pretty funny experiences. I love those nurses and their patience. He was NOT a fun patient.
Our youngest son, Mark, his wife and three kids couldn't stand getting news second and third hand, depending on just who he was talking to at the time. He gathered his family up, threw a few things in his van and drove straight through from Tennessee to Ft Lauderdale (a 14 hour drive after working all day) to be there for his father. He was a real help to me that first week and I love him dearly for that.
The funny thing is that his father has only fleeting memories of his son being in his room, having coffee with him. He knew Mark was there but didn't think it was unusual because he forgot that Mark had moved to Tennessee three years previously. We have pictures my husband took of the three grandkids that belong to my son and daughter-in-law Lisa the first day he was home but he didn't remember taking the pictures.
Now, you must realize that my husband did NOT think he needed to go to rehab. He INSISTED he go home to recuperate. He really and truly believed that he could MAKE his body do what HE wanted it to do and it would only take a couple days. It took two whole days for him to change his mind and another day to get him into the rehab center. Once his father was headed to rehab, my son Mark and his family returned to their own home. They knew they could do nothing for my husband and it was time for the people trained to help stroke victims to take over. My son was just grateful his father was alive.
Once my son Mark returned home, the older of my two sons came down. He was waiting for his papers from the Department of Defense to go to Diego Garcia (he was a civilian employee) so he had a few weeks until he had to leave. He was probably the one who helped me the most in those first few weeks since he spent time with his father at the Rehab Center every day and it allowed me time to do things like shopping, cleaning and providing some kind of normalcy for our granddaughter. We had had custody of her since she started school and she was terribly traumatized from the experience at the theatre. My husband was the closest thing to a father she had in her life and to see him reduced to a semi-paralyzed raving maniac was not the thing you would want to expose a 12 year old to with a hysterical mother acting without thought as to how it would make the child feel.
I was just trying to figure out how I was going to cope with our air conditioning business which was founded primarily on my husbands abilities and his relationship with our customers. He was the kingpin and I was really afraid that things could fall apart without him at the helm. I also had the granddaughter, a huge home to take care of and a husband that was becoming increasingly nasty to ME! He was wonderful with everyone else but ME...the one that was married to him, brought him the goodies I knew he loved, took his dirty clothes home and cleaned them and brought him clean clothes. I spent as much time with him as I could between his rehab sessions but I was trying to balance my time between him, the business and our granddaughter. I remember getting about four hours of sleep a night to keep him happy. I would leave at 9, go home to clean, prepare something for the next day's dinner for my son, granddaughter and I, do some wash, talk online with my sisters for a while and then spend time looking at different stroke information sites and reading. I usually went to bed around 2 or 3 in the morning and my husband would call me at 6am upset because I wasn't there when he woke up.
The rehab center finally moved the phone to a place he couldn't reach so he didn't do that after a few days but I really and truly didn't sleep for more than 4-5 hours a day for almost 3 years.
When my husband was finally able to be released from rehab and start on an outpatient basis, I was literally terrified of waking up with him having died while I slept. Maybe it didn't make much sense but my husband suffers from sleep apnea and will stop breathing for a long period. It has always woken me up from a sound sleep and I would shake him so he would breath. Now I was waking up because of his apnea and I was already sleep deprived! I truly don't know how I did it.
I think the thing I remember most during that time was how ungrateful he was for anything and everything I did for him. I knew he was frustrated and was totally self-involved in his recovery process but he did NOT have to be so nasty to me most of the time. I talked to his doctor about that part and he told me it was probably the major contributing factor to the divorces that occurred when a patient of his had a stroke. Most caregivers do NOT have my patience or my forgiveness either I guess. I knew he HAD to be self-involved to recover but he had a sense of humor with everyone BUT me. I was very hurt most of the time and felt bad about being hurt. It was very conflicting for me. I had no clue as to how to handle things since he insisted I be with him all the time when he was not at rehab. I was beginning to feel very frayed at the edges and I needed to get away for a bit...even if it was only an hour or two. However, what I found the hardest to do after my son finally had to leave for Diego Garcia was to ask for help. I felt this was MY job. Part of the *in sickness and in health* part of my wedding vows. You know what I mean. How could I ask someone else to take care of this miserable, nasty man who needed help to do almost EVERYTHING? Yet, how could I NOT ask for help or have MY health suffer? That would have been even worse. I had no clue what to do.
Oh, it wasn't mine. My husband took my daughter and granddaughter to see the movie Lord of the Rings, the Fellowship of the Ring. I stayed at home because I had a case of the flu. They had only been gone about an hour when I got a hysterical phone call from my daughter (who has a tendency to over-react to most anything) saying she thought her father was having either a heart attack or a stroke. I made sure she used the cell phone she had taken from her dad to call 9-1-1 and told her I would be right there.
I quickly dressed, jumped into my car and headed to the theater that they had gone to and was shaking all the way. My husband of 38 years was obviously ill and I was scared to death that it might be fatal before I could get there. I called his cousin and best friend to let him know that something had happened because *I* needed the support at the time.
When I arrived at the theatre, the ambulance was loading him into it and the paramedics tried to stop me. I later realized they just didn't want a hysterical woman making things more complicated but I was too savvy to be hysterical. What concerned me was whether or not he had a stroke or heart attack. Once they determined I wasn't going to make things worse, they let me get into the ambulance and I realized my husband was in the grip of a right-side brain stroke. His left side was paralyzed and he kept asking me to find his left arm. I said a silent prayer of thankfulness that he hadn't had a LEFT brain stroke, which would have involved the speech center of his brain and left him speaking gobblydegook to the rest of the world. Since I knew him best, I knew that it would have frustrated him more than the paralysis.
His cousin, Butch, met me at the hospital and helped me get my daughter and granddaughter home. When we realized that we couldn't get into the emergency room with my husband while they were trying to determine how severe the stroke actually was, we went and brought my husbands truck home and came back to wait it out until the doctors knew how bad things were.
In reality, my husband had been more fortunate than most because the city he had his stroke in was an upscale community with an advanced life support vehicle that answered calls like the one they got from my daughter. They had a medication onboard called *TpA* that helped stop the damage of a stroke if administered within 45 minutes. As we later learned, he had actually suffered a brain stem stroke and most patients either died or became vegetables. I can't even begin to tell you how many doctors and nurses came to see him during his recovery because they had never seen a functional (well, almost) patient who had lived through a stroke of his calibre.
Now I was extremely grateful he lived through this. However, no one prepared me for what I was about to go through so I wanted to share some of this with people who have no clue. First of all, my husband never suffered ANY pain during this so he was as clueless as the next person as to what happened to him. A stroke is painless. The symptoms are incidious and are usually passed over as just a highly stressful period with a nagging headache that borders on migraine just due to it's duration. Oh, there are other symptoms but that is the one that my husband suffered from...a nagging headache that would ebb at times but never went away. Please either google or webmd.com the word *stroke* and read the symptoms. If you are over 50, have high blood pressure THAT YOU KNOW ABOUT or are in a high stress business, make yourself familiar with the symptoms of an impending stroke. We had NO clue.
When we were finally allowed into the emergency room, my husband kept asking us to find his left arm. He really had no clue what had happened to him AND that whole first week after his first (yes, I said FIRST) stroke, he has very little memory of even after four years. He was very upset to find himself in the hospital because he had no memory of pain, only a malaise and a desire to lay down and rest.
The doctor met with me after the lab and xrays were done. They had tried to do an MRI but my husband became almost violent when they put his head in a kind of face mask in an attempt to keep his head still. However, the normal xrays clearly showed an *incident* and a punch mark (it's all I can call it) that was probably an 1/8" across. It looked like someone had pounded a 3 penny nail into his brain stem and pulled it out. I almost fainted at the sight of it when the doctor explained to me what had happened. At that time they had no clue as to how extensive the damage to the brain was since they couldn't do an MRI until he calmed down.
Let me tell you a bit about my husband. He is definitely an ALPHA personality. He prefers control. I am also an ALPHA female so our marriage was always *interesting* to say the least.
He has always felt he could *tough it out* when it came to being ill. This was going to be a real test of that.
His doctor told me that the same thing that led to the stroke (my husbands personality) was also what helped him recover. I believe that. He has always had a real stubborn streak and a determination not to let anything defeat him. Even during that first week, he tried several times to just * tough it out* and go to the bathroom by himself since he hated those little urinal things they give men in a hospital. It led to some pretty funny experiences. I love those nurses and their patience. He was NOT a fun patient.
Our youngest son, Mark, his wife and three kids couldn't stand getting news second and third hand, depending on just who he was talking to at the time. He gathered his family up, threw a few things in his van and drove straight through from Tennessee to Ft Lauderdale (a 14 hour drive after working all day) to be there for his father. He was a real help to me that first week and I love him dearly for that.
The funny thing is that his father has only fleeting memories of his son being in his room, having coffee with him. He knew Mark was there but didn't think it was unusual because he forgot that Mark had moved to Tennessee three years previously. We have pictures my husband took of the three grandkids that belong to my son and daughter-in-law Lisa the first day he was home but he didn't remember taking the pictures.
Now, you must realize that my husband did NOT think he needed to go to rehab. He INSISTED he go home to recuperate. He really and truly believed that he could MAKE his body do what HE wanted it to do and it would only take a couple days. It took two whole days for him to change his mind and another day to get him into the rehab center. Once his father was headed to rehab, my son Mark and his family returned to their own home. They knew they could do nothing for my husband and it was time for the people trained to help stroke victims to take over. My son was just grateful his father was alive.
Once my son Mark returned home, the older of my two sons came down. He was waiting for his papers from the Department of Defense to go to Diego Garcia (he was a civilian employee) so he had a few weeks until he had to leave. He was probably the one who helped me the most in those first few weeks since he spent time with his father at the Rehab Center every day and it allowed me time to do things like shopping, cleaning and providing some kind of normalcy for our granddaughter. We had had custody of her since she started school and she was terribly traumatized from the experience at the theatre. My husband was the closest thing to a father she had in her life and to see him reduced to a semi-paralyzed raving maniac was not the thing you would want to expose a 12 year old to with a hysterical mother acting without thought as to how it would make the child feel.
I was just trying to figure out how I was going to cope with our air conditioning business which was founded primarily on my husbands abilities and his relationship with our customers. He was the kingpin and I was really afraid that things could fall apart without him at the helm. I also had the granddaughter, a huge home to take care of and a husband that was becoming increasingly nasty to ME! He was wonderful with everyone else but ME...the one that was married to him, brought him the goodies I knew he loved, took his dirty clothes home and cleaned them and brought him clean clothes. I spent as much time with him as I could between his rehab sessions but I was trying to balance my time between him, the business and our granddaughter. I remember getting about four hours of sleep a night to keep him happy. I would leave at 9, go home to clean, prepare something for the next day's dinner for my son, granddaughter and I, do some wash, talk online with my sisters for a while and then spend time looking at different stroke information sites and reading. I usually went to bed around 2 or 3 in the morning and my husband would call me at 6am upset because I wasn't there when he woke up.
The rehab center finally moved the phone to a place he couldn't reach so he didn't do that after a few days but I really and truly didn't sleep for more than 4-5 hours a day for almost 3 years.
When my husband was finally able to be released from rehab and start on an outpatient basis, I was literally terrified of waking up with him having died while I slept. Maybe it didn't make much sense but my husband suffers from sleep apnea and will stop breathing for a long period. It has always woken me up from a sound sleep and I would shake him so he would breath. Now I was waking up because of his apnea and I was already sleep deprived! I truly don't know how I did it.
I think the thing I remember most during that time was how ungrateful he was for anything and everything I did for him. I knew he was frustrated and was totally self-involved in his recovery process but he did NOT have to be so nasty to me most of the time. I talked to his doctor about that part and he told me it was probably the major contributing factor to the divorces that occurred when a patient of his had a stroke. Most caregivers do NOT have my patience or my forgiveness either I guess. I knew he HAD to be self-involved to recover but he had a sense of humor with everyone BUT me. I was very hurt most of the time and felt bad about being hurt. It was very conflicting for me. I had no clue as to how to handle things since he insisted I be with him all the time when he was not at rehab. I was beginning to feel very frayed at the edges and I needed to get away for a bit...even if it was only an hour or two. However, what I found the hardest to do after my son finally had to leave for Diego Garcia was to ask for help. I felt this was MY job. Part of the *in sickness and in health* part of my wedding vows. You know what I mean. How could I ask someone else to take care of this miserable, nasty man who needed help to do almost EVERYTHING? Yet, how could I NOT ask for help or have MY health suffer? That would have been even worse. I had no clue what to do.
Subscribe to:
Comments (Atom)