spouses.. how do you handle it?

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Mike1w
spouses.. how do you handle it?

If you are a spousal caregiver, like I am, I give us extra credit. When a spouse gets sick, parenting and spousal relations are changed in a unique way. It sure gets lonely sometimes, as well as hard. My wife is about 50% functional, vs. before she got sick. She doesn't have much left after volunteering all day. I don't begrudge her, but its still hard. I lost an equal parent, as well as my romantic and 'relational' partner, partly. Its a loss that is fully understood only by other spousal caregivers. It hasn't gotten any easier after 6 years. So fellow spousal caregivers, how do you handle the loneliness and hard times adapting to it?

This is the first time I

This is the first time I actually found any sort of a support system for the spouse of someone who has or is losing their sight. My husband was just admitted to a rehab hospital for the blind and visually imparied. Before I left him he told me no visits and no phone calls. He is expected to be there for about 12 weeks. I dont know how to cope with the lack of contact. The no contact rule was his not the facility. Actually the facility urges drequent visits and phone calls. I dont understand why he wont and doesnt want me to visit. I wish there was someone for me to talk to about this. So far no one understands. Im afraid if I hear "Iunderstand" from someone who has no clue im going to explode. HELP!!!

Sharon,

Sharon,
sorry for not responding sooner. I am sorry to hear about your situation. The best advice I can give is to keep yourself busy. You should also try to spend time with friends, and do things you enjoy. My wife doesn't have any eyesight issues, but I am sure we feel the same. Its a loss when your spouse is separated, either physically or due to illnesses etc. I wish I could help more. I hope things get better.

I am new to this forum and

I am new to this forum and feel that I just need to vent somewhere. My husband suffers from COPD and is now in chemotherapy for stage 2 non Hodgkins lymphoma. He had to retire 2 years ago because of his health and I retired 3 months ago to take care of him. We are getting through the chemo treatment fairly well and he will soon begin radiation treatment. He has also been on pain medication for many years with arthritis in his spine and we have had to deal with his addiction to strong meds. My biggest issue is that I feel we are no longer spouses/partners, but have more of a parent/child relationship. I get angry and frustrated with him and don't like feeling that way. I feel I have to constantly monitor the pain meds and think he sometimes uses that as an excuse to not take care of himself. We have developed a relationship where I am trying to control everything from fear that he will overdose if left on his own, and I don't want to do that. We are soon celebrating our 35 year anniversary and there are times when I don't even want to be here. Anyone else ever feel that you have been placed in this position and need for it to change?

KitKat48
Nan

I am so sorry about all the pain your husband is going through, i have similar situation and feel alot like you do. My husband has stage 4 colorectal cancer and chemo and radiation, doc visits are our regular outings. Love him but i feel the same at home we are just live in this house together. I can't share the same bed with him cuz i bumped him and caused him pain so i sleep in next room where i can still be able to hear him. I do feel also i have to help with meds and sounds little but it is constant since they are what helps him. Feel like a mother instead of a wife. This is my first comment since i am new here but just wanted you to know you are not alone. I hope this helps.

DeBe
Relationship with Spouse

nan, I can relate to your post, and I am so sorry you are going through this. I've been my husband's caregiver for  5 years. He's had two stem cell transplants, suffers from chronic graft versus host disease, neuropathy, recently had shingles and now has pneumonia. I don't know how much longer I can stand this. We live on an acreage in the woods so unless I actively seek out someone to be with it's just the two of us day after day. There are plenty of people I could socialize with but often I don't have the energy to get out. Is this my life now? I'm 61 and feel like I will never have fun again and that my life is over. Then I feel guilty for feeling this way. 

Nan, I'm so sorry for how

Nan, I'm so sorry for how things are going and understand your fustrations. My husband also has COPD as well as many other health problems including chronic back pain. He had another stroke the other day as well. Our relationship has changed through the years and I wish I had more answers for you, but all I can say is hang in there and you are not alone. Caregiving is not easy. I've been dealing with a lot of anger lately, because my husband is very demanding and still continues to smoke some. Please make sure you find every bit of support for you that you can...a friend or phone line to call, message boards, do something every day for you, and look for the positives in everything you can. I've also been finding it helpful to journal...it's a safe way for me to get things out and try to process some of the cruddy stuff in life that keeps seeming to get worse. There are so many days I don't want to be here, but I stay because he needs me. I also deal with a day by day approach and don't try to think too much on the future. I also know this will not be forever, though there are times it feels like it is.

Ladies,

Ladies,

Loosing your marriage is one of the hardest things about spousal caregiving. It's no fun at all to feel more like a medical aide than a spouse. All of us who have done it morn the loss of our marriage long before the death of our spouses.

The only comfort is that when my spouse passed it was a lot easier than I thought. For several reasons, knowing that you did your best for your spouse, and that a lot of the morning had already been done by going through what you are going through now. I still miss my wife every day but I can know that I honored my promises to God and my Spouse. This is the for worse part of marriage. But you will come out stronger at the end.

Beyond Tired,
I'm especially sorry to hear your husband is still smoking. That was the case with my wife as well. All I can say is that now as a widower smoking is a DEAL BREAKER!!!

Tired Dave,

Tired Dave,
Sorry about your wife. I have to agree with you, I do feel it will be easier when he passes as I have done a lot of my grieving. Trying hard to keep that promise, but it is hard. He is a difficult man and has been emotionally/verbally abusive for years. After he passes, I can tell you, yes---smoking will be a deal breaker in any future relationships. I had to help care for my grandpa as a teen when he was on hospice. He died from lung cancer and now I have a husband dying from COPD/heart issues due to smoking for 60+ years. I hope I will come out of this stronger...sometimes it doesn't feel like i'll make it at all. I think he's going to be the only man to live forever who does anything he wants...smokes and eats all the crud he wants to. He's a heart patient and his favorite food is tomato soup with ramen noodles. I'm a good cook and cook a lot from scratch, but oh well.

Beyond Tired,

Beyond Tired,

Yep that wonderful attitude. Been there done that now I ever so politely say "That is one of the things I don't miss." Every situation is different but I kept nagging about smoking to the very end. When she complained I just told here that I was going to stand over her coffin and I would either have regrets that I did not speak up or know I did all that I could.

As for the abuse I just laughed it off and agreed I'm the worst husband in the world. Cooking too. I think all of us are actually caring for members of the same difficult family,

He won't live forever most likely as a heart patient when the end comes it will be quick and unexpected. That makes it harder to get help but it's a blessing in other ways.

All that seems to remain in

All that seems to remain in my marriage is the need. The romance, and most of the friendship, is lost. I am doing my best. I certainly am not the perfect caregiver, but who is?

When we get married we hardly

When we get married we hardly ever realize that one of us will likely be "alone at the end, much less before the end". I have survived 2 husbands (my soulmate of 16 yrs who died from cancer at age 47 and another who died from a heart attack at age 39) I am currently married to a diabetic who is non-compliant and who has suffered 2 severe falls (brain damage) and permanent eye damage as a result. My husband is a wonderful man with a great big heart and has never been able to say no to anyone in need. He also can not say no to sugar. Some of the problems are the illnesses and some are their personalities others are just plain character defects. Facing death takes it's toll on them as well as those who care for them. It is important for us to feel our feelings, but not be controlled by them, just as it IS appropriate for us to grieve a loss when we have had one. Sometimes we just need to be aware the loss occurs before death.

I am new to this site,

I am new to this site, actually today! I am glad to know that my feelings and situation is not unique and there are others with whom I can share.

My husband and I have been married for 8 years, a third marriage for both of us. My husband has had MS since his mid 20's (he is 64 now) and when we married the condition was manageable. Unfortunately, shortly after we married he went down hill fast and was forced to retire from his job that he loved. It was too frustrating for me to be at work and worry about the possibility of him going into seizure or falling, so I closed my business which I was having difficultly with anyway in this poor economy, and retired. No, I'm not sorry that I felt the need to retire because the stress of the business was lifted off of my shoulders. Now it is only the stress of caregiving. Yes, Tired Dave, I have made a promise to my maker that no matter what, I will follow this path until the path ends. I keep myself busy with various projects to try to deal with depression that seems to go along with caregiving. Horticulture is my main hobby and I just keep trying to made my yard more beautiful and raise more vegetables. I love cats, as does my husband. My cats are very loving which helps me deal with the everyday 'downs' and try to turn them into 'ups'. My husband can sometimes be verbally abusive but I am determined to be a duck and let it roll off of my back. I read a lot and one of the books that I recommend for anyone in this position is called The Four Agreements by Don Miguel Ruiz. He has several books out and there is a Fifth Agreement also.

I want to thank all of you for being here and sharing your feelings and experiences. Reading all of your comments today was good for my Spirit. I will be back!

Hi all! I posted this last

Hi all! I posted this last night under a different topic and thought I would share with you all.

Long-Term Caregiving. How do we do it?

Hello everyone! I am new to this site but not new to caregiving. This may be a little long, but I encourage you to read it. I encourage you because I know that you can relate to everything that I am going to say.....

I've been taking care of my husband for 20 years now, worked full-time as a legal assistant and raised three wonderful children who are ages 20, 22 and 23.

JUST HOW DO WE DO IT ALL? I believe you do what you have to do when you have to do it. You get through it. You have to. Someone's life depends on it. Your family's life depends on it. That's a whole lot of pressure!!!!!

My husband contracted Hep C in Vietnam, 20 years later he went into liver failure, liver transplant, then kidney transplant, then throat cancer and two more surgeries, then mini stroke resulting in seizures, then serious car accident as a result of seizure while driving, necrosis of hip, fractured vertebra (more surgery), diabetes and everything in between. He is on so many meds it is hard to count - including some heavy duty morphine. He has now developed demetia from the seizures. We surely have been through a lot together - not just him - but me and my children as well. They were 1, 2 and 3 years old when it all started!

At the very beginning of his health issues, I would sit at the hospital and listen to other patients tell me that their spouse had left them because of their health. You know, at the time, I just didn't get it. Why would someone just get up and leave their loved one (spouse) when they needed them most? Well, now I know. They either (a) just couldn't handle the "burden" or (b) were being selfish. We don't have to do this. We can just walk away. RIght? But how can you live with yourself? I know I couldn't. And here I am, 20 years later, stressed out, burned out, overwhelmed just as much or more than I was at the beginning. But I know one thing - my husband is also here - spending time with our children and me. It may not be the best quality of life time but he is still with us. And that I am very thankful for!

Well I've found out one thing - well - really I've found out a lot of things about caregiving. You know, as I looked through the discussion lists I didn't know which one to pick to talk or comment about. They are all very valid and real issues. Caregiving is one of the most - if not the most - stressful "jobs" on this earth. It is an emotional roller coaster. It beats you down, burns you out, worries you to death, and never stops. It can be very depressing, it makes you angry and resentful. It is totally overwhelming - from beginning to end. It changes your whole world - your life. Especially if it is your spouse. You start losing your best friend, your soul mate, your lover, your husband, the man you used to know. You start losing yourself. And yet, it never ends - this roller coaster of a life. I have a quote that I found and try to abide by it. It goes like this: "Wake up each day and be thankful for all of the good things in your life; concentrate on the positive, not the negative; and this will get you through even your worst days....

I am hoping that this "quote" helps some of you out there as well. We all have a big responsibility on our shoulders but yet we don't walk away. We all should be very proud of ourselves!! We have basically given up most if our hopes and dreams that we had with our spouses "in growing old together." We have basically given up our lives to "care" and to "fight" for someone else's life - and that should be rewarding in and of itself!!!!!!! So, you see, despite all the ups and downs of this roller coaster we are on, it truly can be a rewarding experience. My husband is living proof of it!!

maryCarther
CamilleHy, thank you for

CamilleHy, thank you for posting this. I mean, really! ... THANK YOU for posting this. I will bookmark this, because you are saying everything I needed to hear to refocus. 
I just have to look at this end of life like I handled every job - some I enjoyed, some I did not enjoy, but saw them to their bitter end (military, moving often, so there was always a quick end, whether I liked it or not). I only quit jobs after a week, or two weeks, but never once I was settled. I've seen them all through, regardless of any curveballs life threw me.
This is a job. For better or worse (and it sure enough is worse now) I committed to it, my husband depends on it, and could not, at this stage, turn him over to one of those "care facilities" ... 
THANK YOU for your post. I really appreciate it!

 

Your husband is one lucky man

Your husband is one lucky man to have chosen a wife with such commitment, compassion and love so early in the marriage and so early in your years. You have to be an angel in human form. Yes, I have also heard of so many 'me' people who just left. It is sad especially when a person has served our country and fought for our freedoms to be just left with no one to care about them. My husband's condition is also military related. There are so many veterans who do not have someone to care about them. If I had a big house, I would take as many in as I could and care for them but I do not have a big house. Thank you for sharing your beautiful story of lasting love and commitment.

I just found this forum and

I just found this forum and am very grateful. My husband had a stroke a little over 2.5 years ago. We had only been married for three years at the time. We were living apart during the week and together on the weekends because I had not been able to find a job where our marital home was, so I had to stay in my home during the week in the city where I worked, and travel to our marital home on the weekends. My husband's stroke happened on the day after Christmas, in the early morning hours.

I have struggled so hard with caregiving because I feel like my husband is not trying to get better. In fact, he is worse today than when he first came home from rehab because he won't do the exercises he was shown how to do to increase his strength to be able to walk again. He was walking some and then started walking less and less. He has less strength now than he did then.

There are times when I want to walk away, but I know that I couldn't live with myself if I did. But I feel so alone and so isolated. I did finally get a job that enables me to live full time with my husband, but sometimes I think I was better off living apart from him during the week. Thankfully, I now have a job with very understanding supervisors and coworkers who are concerned about me and my situation and really give me support.

I am glad to find other people who are caring for spouses, because caregiving for a spouse is different than caring for other family members. I don't know a lot of people where I live, as it is the town my husband grew up in. Since I moved here after he got sick, I don't get to go out so I haven't been able to make friends. I live 1.5 hours from where I work, so even though I have one coworker who I am friends with, hanging out is out of the question because of the distance.

Thanks for listening.

I care for my spouse. She was

I care for my spouse. She was hit by a car and has severe brain damage.She needs 24/7 care. I do have help through the waiver program but I am still her main caregiver. I've have no social life . My wife is unable to speak, eat, and is incontinent. I just went to my first caregiver support group. I think it will be helpful.I am disabled myself.My wife was helping me before her accident and now I have to care for her and do the household chores. At times it just becomes overwhelming. Sometimes I get so depressed. I guess the love of God and my wife are what keep me going. Taking it one day at a time helps also. If I start think about the future I'll worry or become downright frightened. That is why I concentrate on one day at a time.I have so much respect and admiration for people that do this.This is by far the hardest thing I have ever done.

All caregivers should read &

All caregivers should read & take to heart the following.

www.leezasplace.org/ten_comm.html

I am now a spousal caregiver after losing Dad & Step Mom at the beginning of 2013. DH became a below- the - knee amputee in early Oct. In Nov we learned he has a 2/3 possibility of losing the other leg. I m fighting for treatment that will make the chances better for a bypass that currently stands at 1/3 chance.

We have been married 42 yrs. This was NOT my idea of a second honeymoon!

BTW, the amputated leg was his driving leg. DH receives the finished prothesis this wk.

Colette

Collette, what has caused the

Collette, what has caused the leg amputation? How is the treatment going to keep from a second amputation? I totally understand your frustration with your husband not being able to drive and I'm sure that frustrates him also. My husband's legs are so weak that he does not drive either, so all of the driving is up to me. I have a condition of my eyesight that makes driving really difficult for me so having to be the 100% driver is frustrating to me.
Is your husband's condition military related and if so, are you receiving good VA care? As long as you keep on the doctors, VA care can be very good, no matter what the hype in the news says.
My husband has MS, military related, and is 100% disabled. MS is such a horrible disease because it attacks different parts of the body at different times. I think dementia is also setting in with my husband from the many seizures he had earlier in his disease.
The lonliness and isolation of caregiving is very difficult to deal with, and especially during the holidays. We had 3 friends over for dinner last night, our only 3 friends, and my husband's body just wanted to sleep. I am dreading having a Christmas Eve dinner with the only family who lives near because I fear it will be another rerun of the sleeping desire. For that reason, I am kind of glad that most all of our family live in other states because trying to entertain people, especially children, with an ill person in the home is a depressing situation. MS very often makes the person sleep alot with loss of appetite and no desire to hydrate ones self. This whole situation has put me into depression that I am fighting big time and that is why I decided to come on this site. It helps so much to be able to vent through a depressing situation. I feel like such a failure that I have not been able to find the answers to fighting the desire to constant sleeping and not being able to find food that he will eat. His appetite is so erratic that food that he used to like, he no longer likes. He doesn't want to eat vegetables or fruits and wants to live on just cookies all of the time! I just don't know what to do at this point.
I hope things work out for you, Colette, and the second amputation does not become a reality. I hope the prothesis works out for him. I know it takes awhile to get used to those devices, so how is it working for him?
I hope you get back to me and reply - I care that you are having a hard time with all of this. I'm sure you will somehow manage to get through it because you sound like a very caring person.
Jackie

Dear Spouse with TBI,

Dear Spouse with TBI,
I have great admiration for you as a husband caregiver. Most men do not have the compassion you have for caring for a wife with the severeness of her injuries. May the Lord be with you in your day to day activities, your caregiving and your own disabilities. I will keep you in my prayers. I hope the support group helps you to cope with all you have to deal with.
Jackie

Hey,

Hey,

I came across this site while doing some research. A little background: I have been the primary caregiver for my husband for about 6 & 1/2 years. He had an accident about 6 months after we were married. His official diagnosis was a TBI & Stroke. This left him paralyzed on his left side. He relies on me for dressing, getting in & out of bed, meal prep, medication management, dr & physical therapy appts, driving, financial responsibilities, shopping, etc. Basically, In this house, if I don't do it, it doesn't get done.

I have really been struggling A LOT lately. I'm not sure if I'm just suffering from burn-out or if I am finally beginning to grieve. Y'all know how it goes, you run on "have-to" the majority of the time. I am physically & emotionally exhausted, the strains of daily care are taking an unbelievable toll on me. I've gained weight, have muscle strains, tight & stiffened muscles, etc. But that's not what drove me here, what is killing me is the overwhelming sadness that I'm feeling. I'm only 34, my husband is 38. This is not the life I imagined on the day we said "I do" & I know it's not the life he imagined either. I feel like I have been "robbed" of a life. I know that sounds incredibly selfish & oh so wrong on so many levels. For this reason, I can't bring myself to talk to anyone bc I know they would never understand. I go from feeling mad, overwhelmed, & depressed sometimes within a matter of minutes. I feel guilty for the way I feel. Loyalty & fear of what would happen to him if I left are the only things that keep me here. Problem is I'm afraid that won't keep me here forever. I'm so lonely, tired, & really missing what "could have been".

I just don't know what to do anymore. Thanks for reading...

This site is a blessing. We

This site is a blessing. We are all able to vent and get valuable information on how to cope with our individual issues. My heart aches for you both, how sad to start a life together only to have it broken apart this way. All I say to you is you are not alone, yes you are worn out, angry, sad and all of the emotions we all feel. Just try to take it one day at a time, sometimes it's taking it one hour at a time. Otherwise you feel completely overwhelmed. My husband is in the moderate stage of dementia we have been together 40 yrs and I am much younger so the caregiving falls to me. Our families are many miles away and are unable to help, I have noticed friends have stopped dropping by and I really miss the "normal conversations" I had with them. I pray everyday that I will be able to continue taking care of him and can keep him here at home. My thoughts and my prayers are with you.

Nicki Hull...I feel like I

Nicki Hull...I feel like I could have written a lot of the same things that you did. I do feel like I have been "robbed" of the future my husband and I had planned. You and your husband are about ten years younger than my husband and I, and we've been married for 17 years, but I echo many of the thoughts that you have expressed. Nobody understands what it's like. I guess that I don't even what you've gone through the last 6 1/2 years because my husband had a massive stroke back on June 8, and he hasn't been home since. I haven't even had to deal with issues of him being home. We have 3 young kids, and the job of keeping everything running in our home, has landed squarely on my shoulders.
We married because we "fit". He is more outgoing, I'm quiet, he's good at math and doing the bills, I'm not. He also likes to be in charge and I'm ok with a more laid back approach to things. We fit together, and now I'm not sure how this is going to work. We are both in education, he's and administrator and I'm a 3rd grade teacher. So we definitely share a love of working with kids.
But now, I'm alone. I know that I have 3 kids that I love dearly and would lay down my life for, but my best friend is gone. He still has a lot of his knowledge and memories from before, but it's always going to be different, and that makes me so sad. We have a large and very humbling support system in our community, but I feel alone.
I've never vented, or expressed these feelings to any support group ever, so I hoping that I will not regret sharing with whomever reads this. I would really like to communicate with people who understand what it is that I'm going through as a caregiver and "single" mom of 3.

Wendl, I'm so sorry to hear

Wendl, I'm so sorry to hear about your husband! There has been a role reversal in our household too. My husband always managed our finances & was truly the "head of household". That's what we both believed in, grew up with, & what worked for us. But when he had his accident, all that changed. I had to learn how to do all the things he did. It's not an easy transition by any means. I had been holding in so many emotions, thoughts & fears. My post here several weeks ago was the first time I vocalized those fears. But I have since started seeing a therapist to help me work through & deal with our situation. I have a long way to go, but it feels good to know that I have a "safe place" to work thru all the issues that I have been pushing under the rug for 6.5 years. I wish you all the best, continue your journey & know that there are no judgements here. We all deal with things that not many can truly understand or empathize with. Hugs!

I just came to this

I just came to this discussion. My husband of 41 years has Parkinson 's. he is in terrible pain associated with it. I have watched him struggle for 18 months with the unrelenting pain. He is now in hospital. Been there 3 weeks and was told today it would be another month. I am bone weary and brain dead from the commute and watching him in such pain. There is little conversation any more and he is morose and sad despite anti depressants. Has any one dealt with Parkinson's and with the pain that sometimes comes with it? Also struggling with Medicare and ins problems. Weary and sad

I am new to CAN and

I am new to CAN and appreciated reading everyone's comments. Have been a caregiver to my husband of 27 years for 19 years. He was given a 5% chance of surviving a brain aneurysm. After 90 days I was told to put in a care facility. I actually brought him home to die in peace. I spent every penny we had and them some on hiring help. Today he is in a wheel chair but has many independent functions. I am self employed, we have animals, property house, etc. Every day is a challenge, but every day I do the best I can. I am very fortunate to still have my husband but I no longer hide the fact that I have two full time jobs but I also realize I am much more fortune than other caregivers. Don't ever give up and if I learned one thing, take time for yourself, even if you just walk around the block.

hjk

Hello, friends. I'm a new

Hello, friends. I'm a new caregiver to my spouse, who suffered a TBI about a year ago after having 3 heart failures in rapid succession (the TBI was due to oxygen deprivation during the first heart failure event). I'm 43, and he's 44. We just got married this past August.

Like many of you, I find that my husband is no longer the man I married since his TBI. He spend two months in the hospital--the first month was in a coma, and the second in rehab/physical therapy. He came back from the brink of death, but his memory and some of his balancing functions were affected. As a newlywed, the thing that hurts the most is that my best friend is no longer there. There is no physical intimacy since his TBI. I have tried to help him work around some of the issues, like balance, that may be affecting his intimacy. It seems that sex just doesn't occur to him anymore. He never approaches me, even though he says the desire is there.

I'm lucky to have a telecommute job so that I can help him during the day. His TBI causes him to fall down unexpectedly in mid-walk, and he has been relying on a walker or a cane to get around (unfortunately, these don't prevent him from falling). I can't go out and do things because I don't want to leave him alone. My family and friends are far away, so I don't get a lot of help.

I'm numb and grieving for the life we wanted, but will now never have. I have communicated to him that I feel lonely without the intimacy we once shared, and he says he understands, but he doesn't try to work with me to make things better. I'm isolated and unhappy. I am responsible for everything, from our income to chores to driving to everything else. Unless I prompt him with a suggestion for activity, like eating or just getting out for some fresh air, he will sit around all day, blissfully surfing the web. He never asks to go out and do anything either, like go to the movies. I realize that he is having to process this unexpected, unwanted new situation and is depressed (he has been placed on an antidepressant), but it's more than that. Things he did and enjoyed before his TBI just don't seem to click in his brain anymore. I'm so lonely and in need of companionship. Please, a few suggestions. Thanks.

My wife's need is almost all

My wife's need is almost all of the reason she stays with me. Its just sad.

If weren't for her illness,

If weren't for her illness, we would have no marriage left. Of course, without her illness, we would still have a marriage. My heart aches. I am lonely. But what can I do? looking elsewhere would be wrong against my wife, a sin in my beliefs, and highly impractical.
I just have to live with how it is, until one of us dies, or she leaves(which is unlikely, despite her comments to the contrary).

As many of you have probably

As many of you have probably discovered, there is very little information geared to the specific needs of couples who deal with a chronic illness or disability. It seems like most of the information that I find regarding caregiving is directed to those folks who are caring for an elderly parent or special needs child. I was glad to have found this forum this evening.
My husband and I have been married 29 years. In 1997 he and our two daughters were diagnosed with a rare genetic disorder. Since then, I cannot even count how many hospitalizations, surgeries, rehabs, home healthcare visits, etc that the three of them have endured. It is not uncommon for them to be in the hospital for weeks at a time. Sometimes I will get one of them home only to have someone else admitted to the hospital.
I was also the primary caregiver for my in-laws before each of them passed away. So you might say that most of my adult life I have been someone's caregiver.
My husband is currently a home hospice patient and like so many of you I can with all honesty say that this is not what I signed up for. We are only in our early 50's. The guilt, frustration, anger, bitterness, exhaustion, fear, sadness, isolation, etc is real. I have seen statistics that say that 75% of couples facing a chronic illness or disability will end the relationship by divorcing. That statistic is staggering. I feel that there has to be a way to help couples beat those statistics!
In light of your current situation, how are some of you coping? What are some of the biggest challenges you both face? How have you adapted to your circumstances?

I don't know. My wife talks

I don't know. My wife talks about divorce, but she is too sick, and despite what others may say, none of them will help her. I won't leave. I feel as though my marriage ended a long time ago, and it just hasn't caught up to itself. I won't leave, and my wife can't, but nothing seems to ever get better. I may not be the perfect husband or caregiver, but none of us are.

So excited to find this group

So excited to find this group . Just about to hit 5 years of a diagnosis for my husband with COPD. At this point our little people are now 17,14,13 &9. I honestly don't know how we made it this far. Combined with this diagnosis is a long history of mental illness. Our 20 year marriage has never been short of issues but the last 5 years have been the worst. Having your little girl ask her big brother if he will walk her down the aisle when the time comes because dad will be dead is heartbreaking - and that was at 6. Most info out there seems aimed at caregivers of elderly, not caregivers with young families. I have so much to write and so much to put out there but I have found this board during an acute exacerbation so I really need some rest. Hoping this group helps me how to figure out the balance and give me permission to take some time for me.

I thought I would write a

I thought I would write a comment because honestly I need to start talking about my frustrations... I am a 48 year old very healthy athletic guy.. Healthcare sales professional who prides himself on being both a leader and self-motivated.. My issues started many years ago, long before my wife was diagnosed with Early On-Set Parkinson's Disease.. The reason I am starting here is it very relevant to the entire story.. My wife has always been (as far as I am concerned non-sexual) I now know the loss of dopamine plays a major factor in the transmission of pleasure signals... Even though when my wife and I engaged sexually she enjoyed herself... She didn't truly comprehend the pleasure and correlate it to our encounter... Over the years our sex life dwindled and dwindled to typically once or twice a year.. I finally had had it 7 years ago and finally began filing for divorce.. However, less than a month into the process she was diagnosed with PD.. It truly took us by surprise.. I told her I would take care of her (mainly so her care didn't fall to the hands of our children..) Since her diagnosis 7 years ago we may have had 5 sexual encounters which I will be quite honest are barely encounters at all.. She simply cannot physically engage... and I will be very honest... physically she is a shell of the woman I fell in love with... Our kids are now beginning their college years and I am 48... I feel bitter, extremely lonely and am staring at countless years of caring for someone who I honestly feel bitter towards... If in our younger years we had a wonderful caring loving marriage then I would be willing to do anything for my wife.. But I have spent countless years as the Bread winner, providing the very best in education, home, vacations for my family while truly getting nearly nothing in return... So sorry for sounding so bitter... Daniel

Daniel, I can relate! Years

Daniel, I can relate! Years and years of fighting cancer with my wife and nothing to show for it. Feeling very depleted and unappreciated. If I had wanted to live a life of celibacy and servitude, I'd have become a monk. At least then I'd be living a relatively peaceful life... but no, we husbands bust our behinds to provide and care and as things gradually get worse, we simply put up with it, trying to live off of ever smaller crumbs of happiness that come our way.
I'm bitter too, and the fact that in our younger years my wife and I did have a close and loving relationship, but that is now a distant memory and no longer puts any wind in my sails. Maybe that doesn't help you at all, except to know that the only thing that matters is how you feel right now. Now kinda sucks a lot.

my marriage ended a long time

my marriage ended a long time ago. From that time till now, its only been a case of the formality of possibly divorce, but most likely death, to make it official. I don't want to sound morbid, but that is how it turns out.

I have been looking for a

I have been looking for a forum like this one for a while. My wife's illness and subsequent treatments hospitalizations and side affects have taken over our lives. Worse I believe she is resigned to declining further and as a male I am driven by the need to fix or attack the symptoms. I feel as though I have been deserted and left holding the bag. What do I do?

LVHC sorry for what you are

LVHC sorry for what you are going through. Other than helping your wife, the only thing you should, and can, do is to take care of yourself. It may be hard, but find time for you. Sorry I took so long to respond, and sorry I can't offer more advice. Hang in there. I will try to think of more things to say later, but as soon as possible.

My husband has abandon me and

My husband has abandon me and the kids for the the past 8months now, and refuse to come back because he was hold on by a woman whom he just met, for that, my self and the kids has been suffering and it has been heel of a struggle, but i decide to do all means to make sure that my family come together as it use to, then i went online there i saw so many good talk about this the priestess Munak's spell powers, so i had to contact the priestess through the website, http://thespellpriestessmunak.webs.com and in just 2 days as she has promised, my husband came home and his behavior was back to the man i got married to, just as priestess has told me earlier.
Thanks to the great priestess Munak, email is priestessmunak@gmail.com. :* in case you tend to keep in touch, my email is lorrho@gmail.com. thanks.

I am happy to find a place

I am happy to find a place where people understand what I am going through. My husband is in denial of early stages of dementia. We are seeing our family doc in 2 days. And I am so scared. I can tell I am beginning to lose my best friend and lover. Idk how people get through this. Because of my love of God I will be his caregiver til the end.

wow. I discovered this

wow. I discovered this wonderful forum doing some research. I am a newbie..my first post on this site. A year ago, my husband was an active trial lawyer…one year later…tongue cancer…first surgery didn't work…30 treatments of radiation didn't work. the doctor told us that the tumor on his tongue just waved its hand at the radiation….so tumor came back bigger and more aggressive than before. June 16 they took 75% of his tongue…grafted muscle from his leg. What an operation! Jack himself says.."who in his right mind would ever think of such an awful procedure" long story short..two months later… my best friend, my buddy…reduced to a thin, depressed person. He has every right to be…a trach…a peg tube…and now when we met with the surgeon last week…he wants to do another surgery to break his jaw (side effect of the total neck dissection - lockjaw) so he can see into his mouth. why? we are at this situation now.. what more can his body take. I want to be there for him..feel so helpless and very isolated too. No communication. He can't speak. I want to stay positive. A day at a time. anyways, thanks for listening.

I am so sorry that we are all part of this club, but it gives us so much support. happy to find you. I thought I was totally alone on this journey.

Hi so I'm going to pipe up.

Hi so I'm going to pipe up. My husband is a higher level quad. He's been in a chair for ten years and one of our biggest issues is sex. Our marriage has gone from happy to living like old people. This happened to us in our late twenties. We have four children three before the accident and one after. We have recently discussed having an open marriage. I'm not sure how I feel about this. This is all so messed up and weird and so not how I imagined life to be.

My wife keeps saying she

My wife keeps saying she wants a divorce. We will see.

This is an old forum, so I'm

This is an old forum, so I'm not sure if anyone still reads it. You're not alone... I feel that way too. I'm not sure what one does. I've tried it all, but nothing changes. In the end I feel such rage, because your loved one doesn't care to hear you. It's as if you don't have any feelings what so every. So what do you do when the other won't even talk. You bottle it up, put on a happy face until you can't and then you explode. Where is the solution. I feel there is none. Are they blind... at times I think so.

Living with someone who has cancer or any other terminal illness is so hard on the caretaker. You tend to lose yourself. Ask me, been there done that more than once. It's like their death is before they actually die. The person you want to still be close to just wants you there so they aren't lonely, but you are lonely even though you're not alone.

You can be the whipping post. Blamed for whatever. All you do maybe not appreciated as much as it should be. No intimacy; that loss is the worst of all... you miss that closeness. You begin to feel like a cook and bottlewasher, instead of a spouse. You can cry, beg, get mad... none that matters. You're not heard. They won't talk. Doctors care for the ill one, but you don't seem to be seen or heard. Their job is to care for the sick. People feel bad for you, but they don't really understand. You can try to do something for yourself... a hobby outside the house just to get out. It helps some, but still you feel that you've lost that smile. You hope for the best, and try to keep the spirits up... but nothing changes from the spouse/ill one. They just don't see how hard this is on you. Too rapped up in their own world. Wouldn't it be nice is you weren't pushed aside... you're feelings were heard... you were spoke to, and they too tried to care for your needs as you do theirs. Don't we have needs; I often wonder. Hurt is what's felt... what I feel.

This is true for even chronic

This is true for even chronic non terminal conditions. It can't be helped sadly. You just need to find a way to relieve stress, etc in ways they can't interfere with. At least we have this resource and similar help available online at least.

You're right, it can be true

You're right, it can be true for chronic non terminal... for any marriage I guess. It helps to see your not alone, but honestly I wouldn't wish this on anyone. Sadly, having a spouse that won't even talk makes it all the worse. Relieving stress is good, but has yet to solve much. Hard to believe one would want their last days/years together to be like this... distant. Doesn't make for good feelings in the end.

Reading these stories is

Reading these stories is helpful. My spouse has many health conditions. I don't feel like sharing details at this time (personally, I get tired of telling what's going on as I would like a break from it & don't want his illness to define who I am), but I'm exhausted, lonely, stressed, sad, mourning, angry, frustrated... Which is why I'm writing on a forum at 2am with tears in my eyes & then get to go work for the day. Actually, at this point work is my only respite.

Irish56,

Irish56,
I completely understand where you are coming from. I go to school and work and many days I find myself not wanting to come home and running away (if that was even possible). I love my husband but I just wish it wasn't this hard. I just joined this website today because I am tired of feeling so alone. I feel like my marriage and husband are slipping through my fingers, and there is nothing I can do to stop it.

I've been caring for my wife

I've been caring for my wife about 10 years now. She has MS, which causes a whole host of different problems that do not allow her to function independently. I'm in my late 30's, and my wife is the same age. Actually, contrary to some of the other spouses described in this discussion, I commend my wife for the way she handles her daily struggles. I try to remind myself that if I were in her shoes, I would probably be a top contender for world's most miserable person. Just my opinion, but in general, I think men have a much harder time accepting physical limitations and not being able to "provide" for themselves, much less the ones they love. So, I consider myself lucky that we still enjoy each other's company.

There are several things I find frustrating. But at the top of my list is probably our family and friend's lack of understanding. For example, her parents/my in-laws... they are great people, but as soon as they have their own problem to deal with, they just drop any "commitments" to helping out. Mostly, I take care of my wife and they help with our son (their grandchild). But it's equally physically draining and mentally taxing when everyone else seems to have the right to abandon the situation and all the leftover work falls onto your plate. AND it's never the opposite scenario.

And I've got all the same feelings as posted above. Anger, loneliness, withdrawn, hiding at work, intimacy issues, GUILT... which is probably the worst. Feeling guilty for needing a break, not being there every second to help when things go wrong, not making enough money to barely sustain a comfortable life and affording all the bills for doctors, treatments, meds, etc. And there's anger and frustration. Care providers do so much, but the only payoff is normalcy; to maintain some semblance of consistency and stability. Our quantity of efforts in life are multiples of that of a regular person. Yet, all we can hope to achieve is the baseline: dinner on time, a clean home, maybe watch a sitcom for 30 minutes. And although we are physically capable, we forego our own ability to experience new things, like travel to non ADA compliant parts of the country or rest of the world, sit with our friends at a baseball game, or go dancing. Hell, we can't even do something so simple as eat dinner in a booth at a restaurant, or sit at a bar-height table or counter. Some of those activities are trivial, but it's not the lack of having the actual experience that's tough. It's just the fact that you don't have the choice to partake in something so thoughtless... For healthy people with healthy partners, it would be as if you planned and paid to go to an event in a stadium (sports, or concert) with a big group of all your best friends, and when you got there, an usher said "you can't sit there". You ask "Why? Everyone I know is over there. I came here to enjoy the show with the company of all my friends." The usher says "Look, I don't make the rules. But your seat is about 200 feet that way." If you give that scenario to anyone healthy, 99.9% of the time I bet they would opt to not go at all. But that's the only option we get (besides never going anywhere ever again).

Unlike some of those with posts in this discussion, I was only dating my wife when she was first diagnosed. I was 19 when we met in college, we dated for 7 years before getting married. Only broke-up once for a weekend during those 7 years (right after year 1). And I was there when she was diagnosed. So I wasn't blindsided when things started to go downhill. Unfortunately, her disease has been very aggressive over the last decade, which is a little less time than we have been married. But no amount of research or fact digging can prepare you for what's in store. I was so idealistic... convinced that illness was not a reason to break-up. I suppose I still feel that way, but now realize how much easier it's said, than practiced. Sometimes it feels like my situation is punishment for being so arrogant to believe in selflessness and committing to the true meaning of what it is to be a partner in marriage (that's probably the anger talking, mixed with a bit of self-pity).

And although I feel the guilt, I think it's natural to want out. Who wouldn't? I look at other couples that get to walk and hold hands, ride bikes, jog together, and sometimes a pretty face catches my eye (I am still a guy). When I look at another couple, I put myself in the guy's shoes and think how I wish that were me holding the had of that attractive and physically functioning partner. Then, to make my fantasy just perfect, I imagine the girl is my wife. Because she is the one I connect with, I can be myself, I know she wants me too and loves me for reasons I don't even get. And I suddenly realize all over again, that the life I want and the life that seems so tangible, is completely unattainable because the person I need to complete the fantasy doesn't exist anymore. (Guilt, then anger and self pity again... seems to be my recurring theme).

Ha... this discussion is supposed to be centered around coping methods for caregivers. Admittedly, I went on several tangents. I guess what I hope to give is some mental relief to those of you who might stumble upon my ramblings:
1) I give you permission to be human, imperfect, let emotions rule your thoughts every once in a while.
2) I acknowledge/sympathize with all the trivial limitations (which sound like bitching and moaning to most) that are the bricks that build insurmountable walls.
3) Drop the feelings of guilt, if just for a while. You have my permission (on occasion) to put yourself first. If you are someone that has dedicated your life to providing comfort to another at your own expense, you have nothing to feel guilty about (but you probably will feel guilty because you're a decent person... just a heads-up)
4) You don't have to share everything with your partner. You are an individual, and we all need to hold some aspects of our own lives personal; not to hide or keep secret, but to have something that is our own.
AND 5) Be proactive about being an individual. Find and plan short periods of relief. Take exception to your reality. You can't drop everything an run, but you can put it down for just a while. My personal example: I recently told my wife (and she agreed) that for the sake of my sanity, I need to force myself to get away from all the caregiver responsibilities on a regular basis. "On a regular basis" was the missing ingredient. We had always talked about finding another caregiver so I could have the occasional Saturday or Sunday off. But it never happened because there was never an "occasion". So, now I have one designated weekend a month that absolves me of caregiver responsibilities for 24 hours. Whether I like it or not, have made plans or not, this person is going to come and take over. It's scheduled; on the books; set in stone. I'm forcing myself to live a little. It gives me something to plan that's exclusively mine, and I have something to look forward to. It can even be just staying at home, but I get to be a husband and a father. Free from lifting, feeding, helping with going to the bathroom, cleaning up messes and spills, waking up 2 or 3 times a night to adjust my wife's sleeping position.

Just give it a try.

Hi,

Hi,
I’m very relieved to have found this site/forum. I am a 38 year old woman with a husband that was diagnosed with a rare form of cancer, osteochondroma sarcoma, on 5-21-12. It was found in his right knee. I remember sitting in the exam room with the doctor and saying, okay then let’s fight it. The type of cancer my husband was diagnosed with is resistant to chemo and radiation. The only way to successfully treat it is to remove the joint. Well he had already had a total knee replacement 3 years prior. That meant that he would have to have an above the knee amputation (AKA). This rare form of cancer does not metastasize to other joints, but to the lungs. Yep you guessed it… it moved to his lungs. After several trips to the hospital to monitor the nodules in his lungs he finally decided to have them treated. Due to his weight which had increased due to the depression from his diagnosis, the docs were unable to do the lung resection. He did successfully undergo a Radio Frequency Ablation procedure to burn the nodules out.
On 1-22-13 my husband drove with two legs and feet for the last time to the hospital to have his AKA. He made it through the surgery just fine. It was the next day that all H&(( broke loose. His kidney’s started to fail as a result of the pain meds he was given to help his body deal with the shock of losing a limb. He was intubated and rushed to ICU. Fortunately his kidney’s started functioning as soon as he was placed on a vent to keep his O2 and CO2 numbers normal. Over the course of the next month my husband was intubated and extubated 4 times before a tracheotomy was done. These intubations are now referred to as traumatic intubations as they were all done when he de-stated (once when he threw a saddle PE 7 cm in size – if he had not been in the ICU he would have died that night). He finally came home from the hospital 49 days after his amputation.
Since then he has had 10 surgeries on his throat/vocal cords/airway to remove scar tissue to allow him to breathe normally. His last surgery was last week. He had a surgery that, if it doesn’t work, means the trache will be permanent. Due to a stent that the doc has placed to allow his larynx to heal, he is currently unable to talk. He has had the trach since April 2013. He has currently wheelchair dependent due to not being able to overexert himself with training on his prosthetic. He is constantly coughing up phlegm. He is still able to work as he works from home full time in the IT industry.
As a result of all of this I have become the primary doer of everything in our home. I do all of the cooking, cleaning, shopping, yard work, bill paying, home improvement projects, car repairs (when I can), child rearing (we have custody of his 17 yr old son). I do all of the care for the pets, and the holiday organizing. I do all of the medical care stuff. I know what meds he takes more than he does. I deal with the bill collectors asking for payments. I feel like I’m no longer his wife, but servant. I don’t even remember the last time we shared a bed (not just the physical part but just to be in the same bed) (he uses the hospital bed in our living room and I sleep in our/my bedroom on the 2nd floor). I don’t remember the last time he told me he loved me.
I feel so guilty for even thinking about these things. I came so close to losing him several times while he was in ICU that I know every day he is with us is a gift. I wonder though, if our positions were reversed, would have done all of this for me. As I have re-read this I see how selfish it sounds, but I can’t help the fact that I miss having a marriage and a full partnership. All I have left is a patient. I miss my husband. I hate that I feel this way as I know this is what I signed up for when I married him (in good and in bad, in sickness and in health), but I'm just so tired... so very tired... :~(

EJV,

EJV,
I can so relate to your feelings of a servant for your spouse. It does to many who do not function in this way that we might be whining. I hear a lot that I am lucky to still have him in my life. I could not agree more, but I miss the relationship we had, and now since he is getting worse, I miss what we still could have. I work full time and ended up back in school to be able to survive financially when he is gone. But, many do not understand how draining it is, nor how difficult to look at the man you love and watch him deteriorate in front of you. Every day is a gift, even if I spend my time watching him sleep because of the disease, the meds or boredom or depression. I am alone in my struggle as we do not live close to family and our child has grown and moved away with her own young family. One hard thing for me is to leave to go to work, knowing he is home alone. I can call him several times during my work day, but I begin to panic if I can't reach him. I can't afford to quit my job as we would not be able to afford our home if I did. Luckily, he recognizes some of the effects this has had and is willing to talk. It is these talks, although at times morbid, that remind me what a wonderful man I married and that he still loves me, but hates that he depends on me so much.