I just thought I would give a few more thoughts on caregiving. Chats are hard. There is no practice, no script, no spell check and no sanity check. You don’t always get the questions you want to answer, and sometimes you don’t actually know the answer to the questions you are asked. Our computer didn’t exactly care for the chat software so you have to work around that too. I could see reader comments scrolling down my screen but couldn’t answer though I wanted to. I hope some of those awesome people will register so we can form our own caregiver support network right here. But here are some random thoughts.
I can’t say I know how I do this on a daily basis. I get up each day and it just happens. I schedule, juggle, and just do it. I don’t always do it well. I don’t always do it with a smile, and I wish I could say it gives me great joy but usually it doesn’t. I rarely look inside and wonder how it has changed me though it has.
I don’t feel depressed, nor am I medicated or in counseling. I am coping but there are days that are overwhelming, not all, but some. I think a lot of people live this way, caregivers or not.
All these things aren’t a secret to Rick. We talk a lot. In fact he was sitting there watching the chat and providing his comments and encouragement. He didn’t want this for our marriage either, so it’s not like it is one sided or a mystery to him. He hates disturbing me at times as much as I hate being disturbed.
People (volunteers, family, and neighbors) are afraid to stay with Rick for any length of time. I understand that. His needs are great and without training it is scary, but some do offer to help out with the boys. We have mostly found a way to be self-sufficient with just us and the hired nurses.
Our marriage is mostly a friendship now. The romance is hard to find and from discussions with some of my virtual buddies I think this is all too common. The desire is almost absent. Perhaps this dooms our marriage but doing things that don’t feel right anymore aren’t a marriage enhancement either.
For me, strength is found through faith, family, a few great friends at work and my kids. So what is left you ask. Here is what I’ll tell you: So faith, hope and love remain; these three, but the greatest of these is love.
Hiya Trish .... and everyone else,
I'm a caregiver too, my husband is a C4/5 quad of more than 20 years. I have an 8 year old and I work full time. I work from home because we have no caregiver for my husband other than me. Insurance does not pay for anything - and as you once said to me in another place, I think that the insurance companies consider brain surgery as "custodial care". So my random thoughts on caregiving ...
I have tremendous guilt because I "chose" this life. My husband was injured for many, many years before I met him. We dated for over a year before getting married. As soon as we got married though, his benefits for caregivers was completely cut off since our joint income was far too high to quality for any assistance. Since that time, over 4 years ago now, I have been so incredibly taxed - to the limits and beyond it seems. But whenever I feel overwhelmed, I feel guilty about it because I "chose" this life. I more or less feel alot of times like I deserve this since I voluntarily got myself into the SCI life. And its hard to explain because I really, really love my husband. He is an amazing person - far more amazing than me, and not because he's this big inspiration, or maybe in addition to being such. He's incredibly kind, patient and loving. But it is hard to square my feelings of love for him sometimes with being so incredibly overwhelmed with my day to day life. In many ways its alot harder than being a single mother - I have the single mother gig plus taking care of a 100% dependent adult (he can't move at all below the shoulders). Add in a full time job and well, its a recipe for physical and mental meltdowns sometimes. The bottom line is that I didn't really know what I was getting into. But I still would do it again - I love my husband very much and despite all the hassles, he is ultimately worth it.
About friends and family .... since I wasn't around when he was first injured a very long time ago, all of the initial help and sympathy was long gone by the time I arrived. I have support from my family with my son - my parents live nearby and take him alot to play, watch him, etc - but I am always the caregiver. No one likes to be left alone with possible medical stuff with him. Although he is not on a vent like Rick, my husband does have issues that can flare unexpectedly. Its just really draining when I know I am always on call. We used to have some help, but we paid 100% out of pocket and we just flat out can't afford that at all anymore. So with no friends or family to allow me a real and true break, I feel really stuck sometimes. OK, most of the time.
Which leads me to the last random thought .... the people who give advice on getting help, it makes me absolutely nuts. WHERE do those people think I'm going to get help? I can't grow money on trees and no one works for free. And no, for the 492nd time, our insurance covers NOTHING NADA SQUAT for his care. And as above, no one really helps. I just get so frustrated by being told that I need to take care of me, that I need a break, I need to take a break and hire someone that I may punch the next person who tells me that. Do people think I'm doing this, running myself physically into the ground, because I want to? That I have help available and I just choose to not take it? Nope.
Wait, I lied ... one more thought: I have been lurking here for awhile and have been very, very impressed with Dan's thoughtful responses and empathy for everyone living this life, those who are injured and those injured by proxy. Thanks for making this a friendly and supportive place.
Don’t get me started on custodial care. I will eat my cell phone if a custodian, Wal-Mart greeter, or PhD in rocket science could come here tomorrow and successfully get Rick out of bed. That doesn’t even include the bowel program, trach cleaning and changes, SP catheter changes, suctioning, and Lovenox injections. Those activities are reserved for the highly skilled custodian.
Just for you and me…like the e.p.t. do it yourself home pregnancy test, I can’t wait for the insurance companies to come out with the b.s.k. “Brain surgery kit” in case you were wondering. How hard can it be?
Dear Trish,
between eating your cell phone and beating up the pizza guy, I'm starting to get a little worried about you! Not really, not only do you have love in your life, you also have perspective. You and bright blue skies and all of the other thousands of caregivers not only have difficult lives, but you are exposed to people who feel helpless in the face of your suffering and wind up saying some pretty stupid things. Many years ago one of my students as she was graduating the family therapy program said that this moment felt like her childhood -- that she was expected to do something she really wasn't prepared to do. I can't help but thinking about the tears in her eyes as I listen to any caregiver open their hearts.
Any compassionate human ones so much more for you than you have. More time, more romance, more help but especially more compassion. My great wish for you is that everyone could bear witness to your lives with loving eyes.
Meanwhile, I am going to look online for some edible cell phones -- just in case.
Dan
BBS: Here is my feeling on “ I chose this life.” I look at it as you chose to fall in love with someone and as a side note he had a SCI. Maybe you just aren’t in love with being a full time caregiver. I think I have the same guilty feelings that you do. I feel guilty because I don’t love being my husband’s caregiver. Maybe we can love our husbands but dislike being their caregivers.
I guess in a way I chose this too. After 9 long months in the hospital, I chose to bring him home. Many health care professionals suggested he go to a nursing home, but I just couldn’t and wouldn’t do that. So I made the choice to keep our family together at home. But like you, I didn’t really fully understand what I was getting into. I wasn’t prepared for all that is entailed with finding, keeping, and managing hired caregivers. I wasn’t prepared for the tremendous amount of worry and pressure that I face everyday. Like last night at 4:00 a.m. our smoke detectors went off. Talk about panic. My two boys are upstairs asleep, and I am downstairs with a paralyzed husband. Luckily it was just some malfunction, but still it reminds me everyday what could be. I also wasn’t prepared for feeling like a “non-person.” My husband came home on Good Friday 6 years ago. The first few months were extremely difficult, but we survived. 6 months later in October it was my birthday. I remember that first year he didn’t even acknowledge it. It wasn’t that he forgot. He knew it was my birthday, but he just didn’t feel like mentioning it. I knew I signed up to take care of him. I just didn’t know that I had signed up to be a non-entity, not even worthy of a simple Happy Birthday honey. I wasn’t expecting a cake or a gift because I knew that at this point that was impossible for him, but I didn’t even get a simple acknowledgement. That really hurt. That’s when you stop feeling like a wife and feel like you are a hired caregiver too. I wasn’t prepared for that.
I often wonder about what would be if our van had rolled the other direction, and I was the one paralyzed. My gut tells me that I would be in a nursing home. I’m not sure why I think about that, but I do. I wonder…what choice would he have made?
Early after my accident, I had a lot of bowel accidents. When it happened, I felt tremendous rage and self-loathing. I would say to my wife how disgusting this was, and she would say not to worry that it wasn't that bad. That didn't do anything for my self-loathing and made me feel more alone because I didn't believe what she was saying.
Finally, she said that it was disgusting, that our bedrooms smelled and the idea of my laying there was awful. And then she said "it's not you, it's a quadriplegia, this has nothing to do with who you are." For that moment, I felt less alone and I cried.
We all make choices in life and none of us have any idea how they will turn out. Most live under this great delusion that we know something about what the future would look like. We still think "if I do this, then that will happen." Those of us who have acquired this uninvited wisdom understand that we make our decisions and hope for the best knowing that all we really know is what's happening right now and that the future presents itself as it wishes.
I am really lucky in many ways because my husband is really, really patient and loving. He wouldn't ever forget my birthday or not mention it. He does nice things for me all the time (to the extent possible). He says nice things to me. But as you say, I am soooo not in love with caregiving itself. I do know that if the shoe were on the other foot, he would take care of me. So in that way I'm lucky because he is appreciative. In fact, I spend alot of time trying to make him not feel guilty because he hates imposing on me. He knows he is imposing, but there aren't two ways about it.
My biggest thing is that I can't, or feel like I can't because of prior experiences, talk about how difficult caregiving is on me. That's because he does one of two things: falls into a huge depression because he feels guilty about what it does to me, or he rebuts what I'm saying with arguments to the contrary. The latter sounds odd, but here's an example. At my insistence, he had a SP catheter put in about a year ago. Before that, it was round the clock cathing every 6 hours (or sometimes more often) and I never, ever ever got to sleep more than 4 or 5 hours at a stretch. When he finally agreed to have it put in, it made a massive, and I mean massive, positive impact on me. So if I talk about how caregiving is hard, he will often bring up how much easier it is with the SP, and how it was a big sacrifice for him to get the SP and how I told him it would be so much easier if he did, etc etc. Which is all true - it IS easier. It was a big sacrifice for him. But all I hear is "kwicherbitchin". Then the more he tells me (or so I hear it) that its not so bad, the more frustrated I get.
This is why I have a cozy group of online friends who really get it, and that helps tremendously. To have people to say the deepest darkest things to, and not have them completely fall out of their chairs with horror and dismay, and often to share the same feelings back, is beyond belief helpful. But it all comes back to guilt for all of us in one way or another. My husband has guilt for getting himself into the situation in the first place. I have guilt for feeling overwhelmed. He feels guilty for overwhelming me.
I guess there's no solution. But talking about it helps.
ETA: to Dan - I am a funny one, I really don't get grossed out by all the bowel and bodily fluids stuff, I really don't. I have an iron stomach and a poorly functioning nose (really, I have a poor sense of smell). These things come in VERY handy as a quad wife. :) But I get burned out on the constancy of caregiving, the always being on call, always being there, always being responsible even if I really, really, really don't want to. Or can't. Even if I can't, I have to (there's a long story about a time I couldn't, but still did). There isn't a choice. That's the part that is hard, the not having a choice. Nothing is optional when it comes to meeting his basic needs of life you know?
At the risk of being too intrusive in your marriage, I have something I would like to say to your husband. You can choose whether or not to show this to him.
Dear husbandI know how much you suffer with this awful disability as I have the same. And I know help terribly guilty you feel that this wonderful woman has compromised so much of her life to care for you as I have felt that guilt. She has also made clear that you are a wonderful husband, loving and grateful to her. Frankly, you are more kind and compassionate than most men in your position. But, she is also feeling lonely these days. Her greatest burden in life is the fact that she is working so hard to do all of the physical crap that needs to be done and she can't talk about it with her best friend. Frankly, I don't know which is more difficult for her, the hard work with loneliness. Maybe it doesn't matter. But I ask you to do this a great act of love, courage and generosity -- just listen to her and try to imagine what her life is like. To do so will be painful for you almost beyond imagination. But I promise you it will be one of the most generous and loving things you have ever done for her.I wish you both continued loveDan
Ummmmmmmmmmmm.
No.
I just can't, it really wouldn't be fair of me because I know how he would react - either he would feel guilty or I'd feel guilty. But its really nice to have people who understand, particularly someone who is injured himself. That really does help.
