The piece below is one reader's comments to my blog post about back pain. I post it here because I think she not only raises a crucial question about the caregiver's responsibility, but she does so with great awareness, openness, and articulateness. And she is asking for support and advice. So please, if this piece speaks to you, help her out by sharing your experiences and ideas. (btw - she gave me permission to repost her comments here)
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My husband and I have been married 18 years. He was in a car accident 12 years ago that left him with chronic back pain. After several surgeries he was left with a failed fusion. We seemed to muddle through our new life ok for a while. But as of late I see him diminishing so much mentally.
We have two children that he simply does not have the "energy to parent" and my emotional needs were put on the back burner many years ago. I have voiced all of this to him repeatedly over the last three years but nothing seems to have the status that his pain has in his life.
I am 38 and he has basically turned our bedroom into the extent of his accessible world. Recently he went past my limit and I had to ask him to leave. He has been living at another house for over a month. I just feel so empty of patience for him. I feel so uncomfortable about making him get out of his comfort zone. But at what point do you just give up when your partner can not or will not see past their own nose?
He is seeing a counselor and is on antidepressants since he left. He has always suffered from some level of depression but of course it is very severe at this time. He is upset with me that I am calling all the shots.
However when someone withdraws form life like he has, they force you into that position. You become the only one that is able to fill the car up with gas or make appointments or pay bills. Every aspect of life outside the house becomes your area.
I am wondering if between the medication, depression and pain (his counselor tells me that over time chronic pain patients brains can actually atrophy?) that he is just not capable of any husband responsibilities. And if that is the case what do you do with a man that is mobile but completely stagnant?
Is there anyone else out there on my side of the situation that has been married a long while still loves their spouse but is past lonely, past hurt, past frustrated? How are you dealing with it?
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18 comments:
Barbara, your poster is far from being alone in her plight. On the Well Spouse Association Forum (http://wellspouse.org/forums) the cry of "Enough!" is heard from many spousal caregivers.
Back pain can be intractable and severe, and as such, can cause depression in the ill spouse. For myself, as a well spouse, I find depression in my ill partner to be much more difficult to handle emotionally than physical illness. I have to believe many other spousal caregivers feel that way too.
The term "well spouse" really refers to a spousal caregiver who has done whatever they can to regain balance in their life, and to have some part of their life reserved for respite, and personal interests not involving caregiving.
Your poster, it seems, was not able to achieve this balance with her husband. I am not sure whether he was treated for depression, or even if it could have helped.
CoDA It's O.K. to look after yourself and your needs. Healthy boundary drawing is essential to happy, healthy relationships. Caretaking can also very much be enabling.
I recently lost my brother who had a stroke 3 years ago. His wife divorced him as soon a he got out of the hospital. She was not supportive from the beginning.I and others offered help but she refused -she just wanted out. The poster sounds much different. I would caution to not refuse and in fact, actively seek help in dealing with the ill spouse. He is hurting in more ways than one and will not understand abandonment. The poster will feel guilty as well for abandoning her husband-and rightfully so. He doesn't want to be this way. Unfortunately it takes a rocket scientist to figure out what to do. To start,involve others in the caregiving process. Some pain relieving strategies include an osteopathic manipulative therapist,aggressive and frequent professional massage therapy,an outstanding chiropractor,physical therapy and recreational therapy. If he refuses, do only what you can and keep your own life going. This doesn't have to involve abandonment.
I can definitely relate. My husband was left paraplegic in a car accident 6 years ago. I love him so much but frequently I am so overwhelmed. I have a very stressful job and two busy young children.
Care of the house, children, shopping, homework, school meetings, and over all the ripping and running falls to me. Most of the time I feel like an only parent. It is rough.
For the first 5 1/2 years I wouldn't go off for too long (even on Saturdays) and going out of town was out of the question. The guilt that I felt at "having a life" was and still is hard. Even the children's lives have been stunted as a result of the accident. Now, we go a "little" more - very little - and I worry the whole time I'm gone. I don't know what to do or how to cope with this. Especially since I was always use to going places and doing things before the accident. It's almost as if I was paralyzed at the same time he was 6years ago.
To make matters worse, I have a very active libido. Of course, that part of our marriage ended at the point of impact. Although most people won't believe it, I have remained faithful to my husband because of my love for him and God. However, that doesn't that I have what I call my "hot" flashes.
Right now, I am so at the point of saying Enough is Enough! But, by the grace of God and much prayer I am able to keep going. God has preserved our marriage and I'm grateful.
I have a husband who has been ill for 7 years now. He has chronic lung problems which doctors address the best they can. He has an infection that could be passed on to me. We live in the same house, but there is no intimacy or love. There is no physical contact and the conversation, if it exists, is only about the kids or informational. He is often moody, so to keep the peace I usually just go along with things and say nothing. Best if I don't say anything than to say the wrong thing and get yelled at. He will often critize me in front of the kids. I work and try to take care of bills and the kids, never knowing when he will get worse. I long for a husband to just care for me. He blames me for our relationship failures, that it is my fault. How can I get away? I am so tired of being the "good" wife.
Thank you Richard, Debbie and Anonymous-es for your candid and thoughtful comments. I find that learning about the commonalities, and especially the differences, in approaches helps me to expand my universe and be a more thoughtful partner to my caregiving spouse.
First off let me say that I am the ill spouse so my perspective is from that reality. When one spouse becomes ill or hurt, it is a no win situation. Everyone cannot have their needs met it is impossible. There are so many issues and dynamics that need to be shifted and it takes a very long time for that shift to happen. My husband and I almost didn't make it as many do not in this situation. We now have a system that works for us and for the most part it is enough.
For the early years in our marriage, my husband suffered with depression and I was the one to do the caretaking. But that is what a marriage is, give and take, in sickness and in health. I wonder, if it was a child that became sick or injured how would the responses be different. It seems to me that if a child becomes sick no matter what the age, there is no question that the caretaking parent will move heaven and earth to take care of the child. So why not the same with a spouse? I personally see no difference.
Thank you for your comment Melissa. I think the point you make about marriage being about creating equilibrium as the sands shift from under you is an important one. And I admire the level of commitment you write about - that care of your spouse should be of the same degree as the care you would offer your child. Achieving that is another story for many.
Also - your comment led me to your blog, and I thank you for that. Your blog is amazing, and I hope others find their way to it.
I have been married for 22 years. After almost a year of constant complaining of stomach pain my husband was diagnosed with cancer. The emotional and financial aspects of this situation are overwhelming. I am hoping we don't lose our home and to boot I have three teenagers. My husband is withdrawn and the only people he talks to are his sisters and his moma and brother. I have no sexual or conversation with him. He doesn't talk about anything and I feel dead with my eyes open. I can't stand to hear him on the phone complaining about himself all the time. I want to scream what about ME? I then feel selfish but I feel like my live is over. Does anyone relate to this. I want to divorce but what type of person does that make me??
Anonymous - thank you for commenting with such honesty. I can hear your scream over the internet and truly feel for your misery. I think there are many people who wind up in desperate situations when it comes to dealing with an ill partner. I can only urge you to find some support for yourself -- family, friends, or a therapist. This is too hard a load to carry alone.
That is so very sad. Unfortuately, I am the ill partner of my marriage. The extra stress & responsibility put upon my husband has been overwhelming. To make matters worse-before I became ill, I was the "go-getter" always taking care of any and everything. Now, I am capable of very little.
I have horrible guilt, despite the fact that I did not intentionally become ill or do anything to cause it. The guilt has brought me to the point of offering to leave so that he could have the opportunity to have "a normal life, and a normal relationship."
I don't know what the answer to this issue is whether you are the ill or the well spouse-each has it's own frustration and pain. Incidently, my husband states that he loves me no matter what and does not want me to leave. That is not to say he copes well, as many times he doesn't and "loses it."
Bottom line: It is a tough situation for all parties and one that we so wish we could change...
I am the well caregiver, and my husband of 20 years has blood cancer. One year after the bone marrow transplant, he is now back to being pretty high functioning. While he was very ill and in the middle of the transplant, I had to send my young children to live with my sister, as his needs consumed all my time. I resented it then and honestly I still work on forgiveness. I try to remember to blame cancer, and not my husband. After most of the physical recovery, the depression and emotional recovery remained. I echo others' sentiments when I say the emotional aftermath was far more difficult than the physical stuff. there were times when he was so mean, disrespectful, and baltantly unsafe with the children that I lived elsewhere, commuting in to care for the kids. Lots of therapy & online support groups have helped and we now have a 'new normal.' I am a wife and mother, but also a woman, and i have needs too. I try to forgive myself for doing what i've done: sending my kids away, & having a discrete affair. Best of luck to all of us as we struggle, this is a very hard situation with no easy answers.
I am the "well" caregiver and I can relate to several of your comments. I can tell you that that the least of my worries is sexual...not even close. I have a husband that has serveral chronic illnesses. I am a strong committed woman and sad to say - I feel like I am being broken. I too have reached a point that perhaps I need not be in the picture. He is not happy with anything, he doesn't want to be compiant to help himself and is very arrogant and mean to our daughter of 22 who still lives at home as well as the animals. We are in counseling. He does not like to talk about what is happening. He needs to have a rappore wtih at least two or three of his doctors to have his numbers monitored- unless prompted and even then...does not do. He is enough to push me over the edge. I have so much frustration and anger. I am not angry because he is ill...I am angry because he does not and will not remove his blinders to see or take the time to learn or take the time to do! If the man could understand that he is pushing away whatever family he has down to the dogs that it doesn't have to be this way! Try to take each day at a time and enjoy what time you could possibly have left instead of pushing your loved ones away and making them feel guilty or better yet...so they don't even want to be with him. I have done everything to help and it is killing me silently to watch him do this to himself because he doesn't care at all about anyone and most of all he doesn't care about himself
Gail - thanks for your open and articulate comments. I'm sure many caretakers will resonate with your words. It sounds like there is very little left in your relationship that provides you with nourishment. I am sorry for that and for the resulting anger and emptiness. I hope you are finding sources of connection and joy in other areas of your life - friends, family, animals. (btw -- do you know about Wellspouse.org ?)
I wish you strength and sources of contentment.
gail, I can sort of relate. My husband was in a serious car accident near twenty years ago. Since then, he has had four hip replacements, etc. He has not worked for four years, now. I work really hard, physically at the job I do to keep us afloat. In all of this time off, he has turned into an alcoholic. He does absolutely nothing, and is physically and mentally suffering to a point that the doctor said that I should be prepared to call an ambulance at short notice. He does not want to help himself, he has turned our son against him, and I am really scared about our finances. He tells me nothing. Is there any way that I can do this "power of attorney thing" I just don't know from day to day whether our power will be cut, the bills are paid, or Anything.
Tonight I stumbled upon this webpage. I've been married for 43 years. In all those years, three were considered "normal". When my husband was 30 years old he was given narcotics for an injury he had sustained and every since prescription drug addiction has become the "master" of our home.
At 37 years old he was diagnosised with Rhuematoid arthritis which made it even more convenient for him to abuse pain meds. He has had every joint in his body replaced. Now he is showing signs of mental illness. Our children are grown and I am the only caregiver. For years I was hopeful he would get better, but now realize that at 71 years old he is an invalid. At times he can't feed himself, put on his clothing, clean himself. At times he refuses to even try to do things for himself. I'm so tired physically and emotionally. He acts so rude to the nursing staff when he goes to rehab, won't eat and unless I see him everyday, he becomes angry with me and aggressive towards the staff. I doing my best to stay hopeful but each year it is getting more and more difficult. He tries to invoke guilt upon me if I complain of exhaustion. I use to be able to get to church or shopping, now he gets questions my every move. After reading the postings, I know that I am not alone and I must keep being hopeful that somehow, someday things will get better by the grace of God.
Married 36 years and the last 7 years my husbend has been a parapaligic due to a mass on his spinal cord. There are TWO victoms here. Him and I, and I feel like I am paralized right in the middle of my life. I wish I were the one dying or dead. I was not happily married to him before his surgery and I was waiting for the kids to at least be in college befor I left the marriage. Now I am stuck taking care of a man who hit me and verbaly abused me up until the day he got sick. Now I do it to myself because I am too much of a whimp to leave him. Thank you for letting me say this out loud, my mom died 6 years ago and I have no one to hear my pain. If you can relate to my situation please reply to carmen99@rocketmail.com
Anonymous - I am sorry that you are in such an untenable situation. I don't see you as wimpy at all. It takes huge fortitude just to deal as best we can with long term chronic care on top of all the rest life throws at us.
I hope you do have other family or community support for yourself. You need it and deserve it. One online organization is http://www.wellspouse.org/
I hope this new year brings you peace.
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