Is your spouse and or family understanding ?

[SheilaMarie]

Wow, you have hit on a major issue for me!! I don't want to turn this into one huge rant, but my husband's "non-support" of me in my health issues is almost at the point of tearing us apart. That is especially hurtful because I think I have been exceptionally careful to learn about his spinal cord injury and everything I need to know to deal with it. But I have to constantly remind myself that because I deal with health issues one way, doesn't mean that he has to deal with them in the same way. I am in danger of becoming the "super-caregiver", due to my family going through so many health problems over the years. My father was an alcoholic, and when things got bad and our family was falling apart, at the tender age of 12, I was the one hanging in there, trying to keep us all going. Is it any wonder that about then is when my symptoms started showing up? Then I married young, to a man with health issues (someone new to take care of!) and when my children were born, the 2 boys had pyloric stenosis (genetic stomach problem) and had to have surgery at 4 weeks old, my daughter got viral meningitis at 5 weeks, and my middle son had a nasty homemade fireworks accident at age 15 that took half of his thumb, all of his index finger, and part of his middle finger (right hand) and required numerous reconstructive surgeries.

Then when my parents got sick, once again I was right there, nursing my mother through metastatic cancer that took her life a short 2 months after diagnosis, and then stepping in again when COPD took my father 2 years later. Now it is my husband's mother, who at 87 has diabetes, kidney issues, Parkinsons, and spinal stenosis! So now when I have health problems, I guess I expect everyone around me to act just like I did for them-fat chance! I think they are all in denial, or maybe my expectations are just too high, I don't know. Just feels like they all think I'm a hypochondriac, and my middle son even said so not too long ago-boy, did that hurt, after all I've seen him through.

I try to tell myself that it's just too scary for my husband and kids to consider I may not be there someday to take care of them, but then sometimes I just think they are all too damn selfish to consider it. Take for instance this trip to the VA hospital for my husband's annual check-up. On our way here, he had a bowel accident (and he'd kill me if he knew I was telling anyone!) and he insisted we stop somewhere to get him cleaned up. I really thought he'd be ok to make the rest of the trip, and it's not like here on the spinal cord unit they haven't had to deal with that before. But he stopped at the next exit, went to a motel, handed me the credit card and told me to get a room. I did as requested, then helped him get cleaned up like the good caregiver I am. Ok, so then we get here, and the VA "hospitality house" had no available rooms for me to stay nearby in. Did he give me the credit card to go get a hotel room for me to rest and get cleaned up in?? Guess?
Now why am I in the dayroom at midnight, where I have slept the last 2 nights and will sleep again tonight?? And the VA highly frowns on this, but the nurses are being kind and ignoring me staying here. The first night here I spent lying on the couch with tears running down my face, at the thought my dear husband could be so unfeeling and uncaring.

So there. I needed to unload somewhere, and this post just happened to be here tonight. Now it's time to go find my spot on the dayroom couch and get comfortable ?? for another night. (Our last here, hopefully, he's supposed to be released tomorrow) I try not to think of what sleeping on the couch with my head and neck on the armrest is doing to my Chiari. I had severe dizzy spells on the way here, while he was having his accident, but I just socked down 2 dramamine and kept going...! And then the low blood sugar crisis I mentioned in the pituitary post. So I am getting warning signs, loud and clear, and just keep ignoring them. If I make it through the holidays without a major breakdown, I'll be doing well. And I did it anyways, turned this into a major rant, so I hope you all will forgive me and chalk it up to a bad couple of days. I know it's not all his fault, that I contribute to it, but sometimes it's just ridiculous.

Pain-free and peaceful sleep to all,
SheilaMarie

[SheilaMarie]

Ok, now that I've had a short rest, I read this thread again, and something caught my eye...

Janice, I have had similar swallowing issues as you have. Fortunately, someone (I can't remember who right now, I think it was my pulmonologist) referred me to a speech pathologist for a "modified swallowing study". It sounds like you need one too. Speech pathologists specialize in swallowing problems, and should be able to get you the help you need. The study was interesting, it's done in the radiology dept., and they give you different types (textures) of foods, covered in barium, (yeah, YUCK!) and watch you swallow on the screen. I will probably never eat rice krispies again! I tend to have problems with "crummy foods", like cornbread, and thin liquids, like water and juice. I don't have any problems with my main drink, diet soda, and I thought that was weird, but the speech pathologist said that most people with swallowing problems don't seem to have it with carbonated drinks! Melted butter can get me too. They gave me some thickener to help with the liquids, but since I usually drink soda, I don't use it much. Oh, she also told me to tuck my chin to my chest (the opposite of what most people think would help, stretching upwards) and that does help. And to tuck it towards my weaker right side also. They usually see our type of swallowing problems in stroke patients, so they can help you a lot.

Meanwhile, here in the dayroom, I'm up early. At 4:30, 2 nurses turned the light on, and asked who I was. So I'm guessing the gig is up! Good thing we are going home today. And if something happens that we are not, I will make the 2 hour drive from here to my brother's home to stay the weekend, or however long they need to keep my husband. Once when we were over here, they kept him almost 3 weeks waiting to get a lung MRI to clarify something they saw on his chest x-ray! It was a small calcification, nothing to worry about, Thank the Lord, but that was a looooong stay just to find that out. That's the VA system for you. And of course this time of year, I have way too much stuff to do at home to stay too long, so going on home is another option. I'm sure my cat, Daisy, is going crazy with nobody there! My daughter went by the house yesterday to get some things and feed the cat, and she said Daisy was so happy to see her!! I miss my kitty!

So hopefully we will go back home today. And if we do, I plan on sleeping most of the weekend! And catching up on my e-mail. I couldn't figure out how to get it on this computer. I can never remember all of my user names and passwords, and other people's e-mail addresses! I hope everyone is doing well today.

SheilaMarie

[Janice]

Hi SheilaMarie,

I'm so sorry to hear of all that you're going through, with lack of support. Remember, we are all here for you, whenever you need. Don't worry about venting, you go right ahead. Plus, it feels really good to get that stuff off your chest so "no worries".

Unfortunately, I can relate to being the family caregiver. I've always been placed in the "caregiver" role for my family for as long as I can remember. Whenever my mom had surgery, I'd be the one to pack, and dress, her wounds until they healed. She was diabetic so she had to heal from the inside out, with no stitches. She always got infections whenever they would try to stitch any surgical wounds. When she had her leg amputated, I uprooted my family from IL to CA in order to help her adjust. She had a really time from that point forward so I was there to help her along.

When she became bedridden, again I was there to help her along. It really felt good to know she was receiving adequate care so it definitely wasn't her fault. I only wanted to make sure she was cared for. Even during her last year, I stayed on top of her care with the nursing home and then hospice. I did the same for my sister who passed away from cancer. There always seems to be that one person in the family and that's just the way it is. You're right in wanting to receive the same care and treatment you gave to others but it never seems to turn out that way. I can remember feeling like I was left to fend for myself, in the beginning. That was during my deepest days of depression.

In time, we worked out ways that my family members could help me. Part of the issue was me. I wasn't use to having someone do things for me. I wasn't ready to give up being independent in the areas that I needed help, so it was an adjustment for all of us. I too have that middle child who thinks I should just use mind over matter and everything will be just fine. He believes that I'm not doing all that I can to keep my nervous system from deteriorating. I had a long talk with him but it still hurts to know that he feels I'm not doing my all. It sometimes feels as if he believes I'm a hypochondriac but I can't worry about that. All I can do is continue to do what I can, when I can and not push myself when I can't do something. I have to ask for help rather than suffer with an increase in pain later. You need to focus on doing what works for you, it might be hard but over time you all will adjust. If you don't admit you need help, others don't know when to help.

Basically, I can relate to you in some ways but maybe not all. However, we're all struggling through issues of some kind. Loss of independence, financial problems, on-going symptoms, new symptoms from time to time, we're always adjusting to the changes this illness places on us in different ways. It's difficult and we are here for each other.

Stay positive, and know that it will be alright. Take time for yourself, rest or sleep when your body needs it, and most important when you need help, ask your family. Our families have seen us as the strong individuals we are, so they have certain expectations. It's really up to us to let them know we can't do it alone anymore, and not by choice. Keep in mind that it's an adjustment for them too, but one that can be accomplished. Our families love us as we love them. Some people are just not natural caregivers, but they can work at it. We need to give in and let others be the caregiver too, in their way. You are not alone.

Take care, (((((hugs)))))

[SheilaMarie]

Thank you so much for your kind and thoughtful reply. I was able to read it Friday before we left the VA hospital, but didn't have time to reply just then. It almost made me cry again, to think that there was someone out there who cared about ME! We were able to leave Friday, but as usual it took more than half the day to get everything lined up so we could leave. We didn't make it home until late Friday night, and then I had to unload everything too. (Not sure how to deal with the supposed "not supposed to lift more than 10 lbs." for me-in our family, I have always been the one to do all of the lifting and carrying!) I was able to get a little rest yesterday, but today, when my husband took his afternoon nap, once again, I was the one washing the dishes, doing the 7 loads of laundry that had piled up, taking out the trash, etc. And then he gets up at 5pm and wants to know what's for dinner!?! I told him I couldn't do it, my back was already giving me a fit after all the other stuff I had done! It had to be done today, as tomorrow we will go for my primary care appointment, and we both needed clean clothes to wear.

So I guess I'll get there, a little at a time. Or it's just going to take a major problem or hospitalization for my family to realize I can't do it anymore. I bought 2 Chiari books from Amazon not too long ago, and I am working my way through them, highlighting the things that give me trouble or apply to me. Then I will ask my husband and kids to read them! I know they will never be the caregivers I am, but a little consideration is all I ask. And yes, I do have the independent, "I can do it", stubbornness thing going on too. My mother saw this coming a long time ago, when I had my first son. She told me that I was going to have to take care of myself so I could take care of my family. Joining the National Family Caregivers Association is helping me a lot too. But my husband resents me calling myself a "caregiver", even though I have been doing it since before we were married. He imagines himself too independent to need a "caregiver", but doesn't hesitate to yell for me when he needs something... And I still get pretty upset, when I think that maybe "for better or for worse" only applies to him, not to me.

Ok, gotta run, the dryer is buzzing again. And I need to find myself something to eat-he fixed his dinner, but nothing for me...!~sigh~
SheilaMarie

[Baby Doll]

My husband and family try to be supportive. My husband tells me to take it easy and such, but then other times complains because things don't get done (like the shopping or such) and I know is frustrated not only by the rising cost of my medical bills but also the fact that I can't work. I know he's just frustrated and does understand, but I still feel bad. My parents have been a huge help, but keep asking "isn't there a way to fix it so you don't have to deal with it anymore?" That and I think they get frustrated when I need help because I'm in the hospital or something. But they hang in there like troopers! I think the ones it's hardest on is my kids. I kind of feel like they don't have a real mom because I can't do a lot with them.

[amber4949]

My boyfriend (we live together) is wonderful. I am so lucky because he is completely loving and supportive and willing to listen to me. I don't know what I would do without him. I find it extra impressive because we have only been together for 10 months so it would have been easy for him to just say it was too hard and leave.

I appreciate it even more because things are sort of tough with my family. Things are still far better than for some people however. But my mom has been really sick for the last two years with an auto immune disease and has lost a lot of her independence. My sister has put her career on hold for the last year and a half to be able to take care of her. My family is great and normally they're very supportive but I think that they're already overwhelmed because of mom and don't have the energy left over to deal with me being sick. I think this is sort of keeping them in denial.

How are the rest of your bosses about things? Mine are not at all happy about me missing work and sort of act like I'm just being lazy. This is just adding to the stress because my parents can't afford to help Scott and I out and I feel like my mom is upset when I miss work due to pain and fatigue. I would have thought she'd be the most understanding out of everyone because she isn't able to do most of her normal tasks.

Sorry for whining but it really does help to get things out.

[kccmass]

my husband and kids are very understanding, my mother and sisters are not at all, as a matter of fact, my mother has told me that i am lazy on more than one occasion and even when they are in my area, they do not visit, i have to go to see them when i can.

k

[Icequeen32]

My husband...now gone, just thought I was showing him this info on my conditions to use as ammo against him, or that i was a hypchondriac, that i really wasn't in 'that much pain'. I started questioning my 'sanity'...so i had to let him go

[amber4949]

I am so sorry, K and Icequeen. This is hard enough even with support, I can't imagine going through it without full support. I hope that your mom comes around, K, and that you find a much better, more supportive guy, Icequeen. Hope everyone's having a good weekend.
Amber

[darren]

My wife does not seem to be able to get to grips with the whole issue. She will get mad about me not doing anything. If we go shopping and i say i am tired she gets mad. When she sees me sitting down she gets mad, she tells me i am a useless brain dead idiot, she gets mad when i forget things, she is just none caring and we argue all the time about this illness. The bad feelings and arguments are making me feel worse.

[tlserenity]

what is that country song - "denial ain't just a river in egypt"?

my DH says he understands. but his passive aggressive anger is bursting at the seams more and more lately.
And i really don't even know what to tell him anymore. He doesn't get angry at me about it.
he gets angry at other things and people that there is no reason for anger to be towards. and then when i ask him what is wrong it is always the same answer - 'nothing'.

And more and more he tells me "when you are over this...."

my in-laws try their hardest to be understanding and be there for me. they have helped me through 3 back surgeries just in the 5 years since i married their son.
But this is something they don't understand - they can't see it - they haven't heard of it.
they think sunshine and vitamins should 'cure it'

if only sunshine and vitamins would cure it.
what do all these people think - that we want this???

((((hugs))))

[TiredMom]

My son (9) is the one with Chiari 1 (no syrinx). My mother is great, my sister is great, my daughter (4) is wonderful with brother (she knows she has to be careful); but my hubby... there are days he's more "why the heck are we bothering with this." He's either completely smothering our son (so overprotective the kid can't even sneeze) or he's griping and groaning trying to push him to do things he can't (and isn't supposed) to do. I'm hoping that its just part and parcel of the adjusting to our child having yet another medical issue. But there are days I wonder if he'll ever adapt and come around to be a truly supportive father (and hubby).

[tiddbit]

My common-law spouse was far from understanding and that is one of the multitude of reasons why I left him in April 2009.

[_Bri3249_]

Thank God that I have my dad (he's a neuropsychologist) and he understands the physical part of SM (the pain, the headaches, the weakness and dizziness) and my mom is really understanding and supportive with more of the emotional part (the teasing, the being ignored and people thinking I'm weird). But with my boyfriend and his parents...they try and I'm thankful for that...but it's hard to understand some sort of pain that you've never experienced before. I've learned to try to act "normal" and they seem to forget sometimes and think nothing's wrong with me. I'm glad that they try...but there's only so much they can do.

[chrisb]

My family is ery understanding. My husband is army. And deploys alot. When he deploys my mother comes up to help out because I have so many bad days. It totally sucks she has to put her life on hold for me. But she understands that i have limits to what i can and cant do. BUT at the same time its annoying because she dosent let me do ANYTHING but lay around. My husband has 18+ years in right now. I was diagnosed right after he reenlisted indef. meaning he has to do at least 20 years. or he would have gotten out. He is planning on submitting his retirement packet in june as soon as he is able. Sometimes I feel really bad about that because my husband is all Army and nothing but Army. And honesly I dont think he would have ever retired until they force retired him. But he says that what is left after the Army is family. And that I am important to him also.
Chris