Monday, August 31, 2009

Well Spouse Caregivers: Do You Ever Say, "Enough!"

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)

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?


RichardA said...

Barbara, your poster is far from being alone in her plight. On the Well Spouse Association Forum ( 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.

Anonymous said...

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.

Anonymous said...

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.

DebbieL said...

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.

Anonymous said...

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.

Barbara K. said...

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.

Melissa Bales said...

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.

Barbara K. said...

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.

Anonymous said...

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??

Barbara K. said...

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.

Jeannette said...

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...

Anonymous said...

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.

gail said...

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 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

Barbara K. said...

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 ?)

I wish you strength and sources of contentment.

Anonymous said...

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.

Married Widow said...

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.

Anonymous said...

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

Barbara Kivowitz said...

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

I hope this new year brings you peace.

Anonymous said...

i have married to a guy who has multiple sclerosis .as u said above he too is completely obile but his life is stagnant. I decided to leae as i jus couldnt take it anymore. i was feeling past hurt, past lonely and past frustrated.

Anonymous said...

My husband and I were not so good before his illness. Now, I am seeing the therapist. (I was told that I was sick in the head) Just trying to deal with the anger and stress of hanging on for the both of us. His limits are convenient to the extent of his desire to do whatever the task my be & I completely understand that his pain is very much living thing that has a life of it's own. So there will be good days & bad days. I have health problems of my own & choose to embrace the good times & build my strength for the bad days. He has made a choice to miserable which just absolutely pisses me off. At this point he will say black if I say white. Because I dont know what he's going through. There's some truth to that. I cannot understand the willingness to do nothing to change your situation. Yes, he is depressed and refuses to take any medication or go the therapy, etc. The doctor orders a test and he automatically states that it's too expensive and he doesnt want to go into debt. GRRRRRRR....

Anonymous said...

This comment from anonymous was mistakenly not posted. Here is is:

I've been married for nearly ten years now. Five years ago, my husband was diagnosed with epilepsy.
No one told me about the mental and emotional changes that would come with his seizures. He is n ot the man I married. He's moody, dismissive, self centered. He takes for granted that I'll be there, no matter what happens. He's emotionally abusive. He lacks empathy or compassion for me. Sometimes, basic respect is too much to ask. The change was so sudden, I thought I was imagining things. I've found similar stories from other caregivers. The one thing I haven't found, is hope that it'll change.

I try to remain steadfast, but he doesn't touch me unless its the three times a year that he wants sex and I miss affection. I miss kindness. I miss my husband.

I don't know if I can stay much longer without being unfaithful. I've begun telling myself that I only have to remain until the end of his life, because believing that this will eventually end his life actually helps me stay. I feel like s terrible person . . . Like I'm hoping for it.

No one will help me care for him. I already tried one to take my own life. I couldn't leave, but I couldn't stay. I love my husband. I just don't think I can live

Posted by Anonymous

jeffo said...

I have been married for 19 years this August. My wife during most of that time has been complaining of this illness, or that illness, but mostly GI issues. She has been tested for Crohns, Ciliac, and many others and all have come up negative.She still constantly complains of stomach pain and says things, in front of our children like "It would be kinder if I just died."I don't think she is making her pain up; she has been diagnosed with high enzyme levels in her pancreas, Kidney Stones, and high blood pressure which the Doctor accounts on the pain. because of her many allergies, there are few medications she can take for her pain. She is currently suffering from a Bladder infection but is allergic to every antibiotic used to treat it and the specialist can't get her in for a month. She is under 80 pounds. I AM SO FRUSTRATED! I know it isn't her fault, but I can't help being angry. I have 3 kids that need me to keep it together and I job that I have to keep since I am the family's only source of income. I feel guilty for being resentful, but I am. I just wish she wouldn't whine all the time and blame me for not caring, not helping, etc.... I often avoid being around her on purpose. Thanks for letting me vent.

Barbara Kivowitz said...

Sadly, it's not uncommon for the illness to wrap the couple relationship around it's nasty finger. Illness, especially if pain and exhaustion are present, can consume way too much of your life force. The ill partner can become focused on the illness, at the expense of relationships with partner, children and friends. The well partner can become more and more remote as s/he tries to hold onto normalcy. And both partners can wind up blaming each other - for everything.

Underneath these scenarios run such deep fear and anger that often the couple avoids these feelings, but at great cost. It is natural to want to suppress such hurtful emotions - but they tend to seep out, and often in subversive ways. How many of us have screamed at a jar lid that won't come off, or at a medication with side effects, or at a partner for not making it all better (even though both of you are trying as hard as you can).

What can you do? No easy answers here - because your situations are just not easy. You can try directing your anger and fear at the illness; or sitting silently, side-by-side, and summoning your compassion for each other and your appreciation of the qualities you each possess. You can try individual or couples therapy.

I'd like to ask you to try one thing. That is -- be as compassionate and gentle as you can with yourself. You are doing the best you can, every day. If the illness has overtaken most of the kindness around you - it may sound cliche, but do try to be understanding and validating of yourself. That too can become subversive and spread.

Anonymous said...

I have a couple different perspectives, I hope at least one can be helpful.

My mom is depressed, and through the years kept retreating into herself further and further. She went from being an amazing woman to refusing to get out of bed & needing to be told to take a shower. She wouldn't go to the dr or make an appt. My father did all the house & yard work, child rearing, EVERYTHING. She was fully functional and simply refused to get help, to do anything. Dad was more than a single parent, he also had, in effect, a toddler who would never grow up.

At what point is that enabling? What if he left and she HAD to do it by herself? She's certainly capable! What about HIS life? How is that fair to him? After nearly a decade, he started living his life to a degree. He would hang out with friends, but still be home on time to cook dinner & run the household. After a couple years, my MOM ASKED HIM for a divorce-she felt "abandoned". Two years have gone by & she is still depressed, but shops, cooks, cleans, etc. Even has a couple friends. My father has his life back and couldn't be happier.

I think the poster was completely right. Her husband was ABLE, but had withdrawn & refused. By allowing it to continue, she was enabling him.

I met my fiance 5 years ago. At the time I was healthy, aches and pains sometimes, but completely self sufficient. Two months later I went in for surgery. And then another. It still wasn't fixed. My body was getting worse, I needed severl surgeries on several joints. I was eventually diagnosed with a connective tissue disorder, my body would keep deteriorating and there was nothing we could do. We were dating less than a year & I begged him to leave, he did not deserve a life as a care giver. I was stuck with this, but he had the whole world in front of him. He refused, swore to be by my side the whole way. Now my shoulder is fused and I'll never be able to move my arm again, I've had multiple spine surgeries, I have three more surgeries lined up this year, and am in a wheelchair. He's been there through it all, taken on all of the household chores and helping me with basic care. I still tell him to leave me, he proposed instead. What do we do differently? I insist on him being my FIANCE over being my caregiver. I appreciate everything he does. I INSIST he has time for himself & that he go out with friends. When I'm able, I do whatever chores I can. We spend time cuddling and *try* to have sex or care for each other in other ways. I'm in therapy and on meds. I've gotten him to consider therapy and I get him books on care giving and taking care of yourself first (can't give water from an empty well). I know I'm not the only one affected, and while I didn't get a choice in the matter, he did - for that I am forever grateful and I'll never forget how much he lost and how much he does.

Your poster's husband doesn't seem to have that understanding, doesn't appreciate her or try to do what he can. Since the husband isn't worried about her, she needs to be extra diligent in caring for herself. The burnout she experienced was inevitable with his behavior. She mentioned he is upset she is calling all the shots. If he's that upset, he should do something about it. Seeing a counselor/getting on meds is step one, but he needs to take control of his life, take responsibility for himself, his life, his happiness. He needs to appreciate his wife and all she has done - only then will their marriage work. Also, kicking him out of his comfort zone sounds like EXACTLY what he needed, like it or not. He found the ability to make an appt with a counselor and psychiatrist, to take care of himself - proof he was taking advantage and she was enabling while he was in the house. This should make her even more sure that she did the right thing - for herself AND for him.

Barbara Kivowitz said...

Thank you Anonymous. You have lived in these trenches and are clearly speaking from deep experience and strength and compassion.

Anonymous said...

You are all not alone. I feel sometimes that I have nothing else to give and have checked out emotionally. I stay with my husband because of our two boys. He suffers from chronic neck pain and barely holds on to his job. I feel so quilty fir feeling this way but I wonder what it would be like to be with someone healthy.....

Anonymous said...

My wife have been married for 43 years this month. I have been her sole care giver since her stroke 10 years ago. she has severe aphasia and needs full time assistance. I've been fortunate to be able to work from home and have always been here for her. In sickness and health I will always take care of her.
I have recently met a widow who was her huband's caregiver for several years. She was still mourning his loss after 2 years when we met. She has been very supportive and we have mutual sports, and activity interests. My 3 married daughters think that she has changed me from cynical and depressed old man to a "real" person again. She helps me care for my wife and the three of us are able to go out together for dinner, shopping etc.
Our friendship has become a love and we are still very sexual active. I have found that she has helped me have a better attitude toward my wife and I am able to care for her without feeling burdened.
With her friendship with my daughters and wife I have no guilt in continuing this affair.
We have a great relationship and I would never think of leaving eiher of the women in my life.

Anonymous said...

I have a severe arthritis in my neck, spinal stenosis with myelopathy and my husband is in denial. The symptoms cause me to lose my balance, weakness in both legs, pain in back of neck and creeping paralysis. I take only Aleve for the pain and use heating pads. The treatment is surgery (ACDF). My husband is in denial, he tells me I am lazy and just need "therapy." He is not supportive, screams and yells when something is not done, etc. I have had to cut my diet to avoid gaining weight since I can't walk too far due to my condition. I am 5ft 4in, 140 lbs and above average in attractiveNess for my age, over 50. I am well read, have a good sense of humor when he's not belittling me and doing the best I can. I told him to call a lawyer if he hates being married to me so much. He is making me lose the will to live, he is so condescending to me. He has told me it was my imagination that I was experiencing neurological symptoms. He can't deal with a less than perfect wife. He says nasty things one minute and then he acts like nothing happened and wonders why I don't come to bed at night. He has destroyed my self esteem. I asked for nothing from him except understanding and support.

At the end of my rope. Never had suicidal ideation till this happened, he makes me feel worthess.

Barbara Kivowitz said...

Anonymous - who has two special women in his life -- serious illness upsets all the balances in our main relationships. It's a real testament to your commitment and caring that you have found a new balance that gives the energy you need to be the caring person you are.

Anonymous - whose husband is mean to her -- clearly your relationship with your husband has ground you down. And it's hard enough living with pain and impaired mobility! It sounds like, in opposition to your husband's claims that you are "lazy" or that this is your "imagination," -- you are working extremely hard to cope with your condition and the toxicity in your relationship. You need support - from friends, relatives, your community, a counselor. You need someone on your side who can be a voice of love and compassion and understanding. And it sounds like you also need some kind of emotional plexiglass shield to protect you from his "nastiness." And if you are thinking about suicide - that's understandable. But if you are thinking about committing suicide , please, please seek help. You are too important!

I'm not sensing this - but is it at all possible for your husband to get help (probably professional help) to better understand your health status, and to work through his own issues and feelings; and to get his own source of support?

I wish you peace.

Cheryl Ruth said...

To those who feel trapped and abused by finding yourself married to a person who is sick and disabled. I am so sorry.

I would beg you to feel that you can leave the marriage without guilt. No compassionate person- spouse, friend or family member- can legitimately fault you for changing your situation. There is no reason that two people have to suffer needlessly because one is disabled. The sick spouse is not the person you married and not the person you planned your life with. The huge change that has come to your disabled spouse has also come to you. Neither of your lives will be what you planned.

Being sick brings out the whiny, shelf-absorbed parts of a person. Hurting makes everything else of small importance. That is what the disabled person is thinking about. You must do your own thinking.

I give this advise from the sick bed. I have been chronically ill and disabled for 35 years. My husband has stayed with me and supported me even though I was just becoming so sick that I was disabled, when he married me. We didn't plan 35 years of my being ill. For many years we thought that I would somehow recover, and I think my husband thought that I would die. We were constantly talking, working and planning for my improvement. But that didn't happen. Now, even though I am grateful that my husband has stayed with me, I wish he had not. I feel the burden of having restricted his life. He feels a great deal of resentment, but tries to hide it. At the same time I have not ever adjusted to my disabled life. I am still, 35 years later a dependent.

So what I am trying to say is that it does not end up good for either person. The sick person has to feel obliged that the other spouse doesn't leave. The sick person is always the person back in the bedroom, and has ceased to be a human being in his/her own right. This leads to resentment. The well spouse feels resentment for obvious reasons. These are not issues that can be worked through or analyzed away. They are in the very nature of the relationship. That is in the best scenario. Throw in personality disorders, addictions, children and financial problems and you have a time tested recipe for hell.

Most of the time the caregiver is put in the roll without prior knowledge of the changes it is going to involve. The spouse becomes sick or disabled and that takes all of their attention. Then, later, the caregiver realizes what position that has left him or her in.
Right now, you should step back and evaluate the future. Instead of just being pulled along you can look at the options now.

The options you have may be different than they seem. You were stepping up to do what you had to do. Now that you know that this is a permanent or long term situation you need to get your breath, ask for help and try to get control of what is happening.

You can:

-continue doing what you are doing, (maybe you are a natural caretaker and just need some help)
or -continue what you are doing with modifications (help, limits, conditions)
or -change the situation using a plan and in agreement with your spouse
or -walk away.

First you need to really identify the problems. Then identify what is an acceptable solution. Is the main problem that you are trying to live on one half the wages? or that you have no sex partner? or that you are constantly overworked? or that your sick spouse is mean? or all of the above? Each one of these problems has a different potential solution. Or are you saying - no. I didn't sign up for this and I don't want to. That is ok. No matter. You can stop and change directions - your dependent spouse will end up thanking you. With some creativity you can continue to have a relationship with your partner without the emotional and physical burdens.

Looking back and hearing, with tears, what you are saying, that is my advice.

Anonymous said...

I just found this blog yesterday. I am a mid 50's male and my wife suffers from multiple complications which have little to no chance of improvement. It is good to know there are supportive areas like this as I don't believe that anyone around me can know how I feel. I have been her caretaker for several years. Our intimate life is gone now for over 2 years. I am in excellent shape with the libido of someone half my age. Problem is that I love her very much and I feel selfish having my needs, and I don't want to betray the vows we made before God. I know a lot would say to "take care of myself", but it is not the same.

Liz said...

Hi all I am 48. My husband started getting ill when I was 40. After many tests, doctors, trips to mayo clinic he was diagnosed with rare poems syndrome. He had stem cell transplant 3 years ago but never returned to good health. He's on disability. Once active, now hardly leaves house because he's constantly fatigued, gets confused and recently severe vertigo and can't really drive. So I do most everything. We have two teens. I'm tired. Miss my husband and find this very difficult. To Melissa who posted in 2009 that it should be same as caring for your child I strongly disagree! There's a loss of intimacy, change of roles. Of course unconditional love but really? I miss planning fun things, we can't do what used to. I miss him being parent he once was. My kids don't remember him as anything but ill . My son obsesses he will get same disease or cancer. I am trying hard, get help but am bone tired. And he doesn't require the physical demands as others mentioned. I too get sick hearing others talk of trips, problems planning vacations. I'm jealous and yearn for men I see active, running errands, doing fun stuff. And my husband is good man, not his fault he's got this disease. But like caring for child? No. No way. I too feel selfish having my needs. Told my husband I want to do things, travel, he says I have to go alone because he can't that hurts. What do you do? It's not same as child, because expectations and hopes different.

Anonymous said...

Hi Liz,
I posted the comment on 12/23/15, and I completely understand as it is exactly the same for me. My wife cannot do what she used to 5 years ago. I miss the person she used to be. I too feel guilty for having my needs. I'm 54 however I am still very much alive and active, but taking care of her and 2 teenage kids can wear anyone down. I wish you the best.


Anonymous said...

I feel so guilty reading all of these stories and comparing them to mine. My spouse's illness should be partially (perhaps mostly) reversed within a year or so.

My husband had an unfortunate accident breaking both of his legs last month. We have had temporarily retrofit the main floor of our home with a hospital bed, remove doors etc to suit his situation. I guess my resentment may stem from our less than perfect marriage, it has just been intensified by this life circumstance. I work full time in a very stressful environment and have barely been able to hang on to my sanity. I was in fact preparing to take an illness leave due to my inability to cope with what is already on my plate. My sanity now has to wait since someone has to pay the bills and take care of both my special children.

I have always believed my husband to be physically careless, putting himself in harms way, not considering the long term ramifications of that (what about his wife and children??) This is not his first preventable accident. For a very bright individual, he has made selfish choices.

We have 2 children with special needs, one has low functioning autism and this accident has just put even more stress on an already compromised family dynamic.

I suppose I may be in a better position to deal with this hurdle if all the stars had aligned and our marriage and children and jobs were perfect, but unfortunately fate does not discriminate.

I apologize for ranting about what may not seem like an such a big problem, and can't begin to feel other poster's long term suffering. I just feel some amount of relief being able to share my feelings with other people that can relate.

Barbara Kivowitz said...

Hello anonymous. Firstly - I don't accept your apology. Your circumstances, and the stress you are under deserve as much compassion as anyone's. Hurt is hurt. Depletion is depletion. Disappointment is disappointment. Your experience matters, because it is yours.

You write with much wisdom. Illness doesn't fall on a blank slate. It falls squarely on the geography of our existing relationships and life circumstances. And they color our experience of the illness. It sounds like your circumstances were already difficult, and your husband's condition, and your estimation of your husband's inattention to safety make it all even harder.

Yet, you have been coping. I'm curious about the strengths in your universe. Clearly you have your own. What about other supports - human or animal or spiritual? For some folks - who can't lessen the stress of the illness, adding other sources of comfort and support can help.

Anonymous said...

I am a mid-50's male with a wife that is very sick for the last 5 years with no chance of recovery, and no idea of how long she can go on in this condition. I have been supportive and faithful, however on the selfish side, I don't know how long I can go without the intimacy.
I pleasure myself occasionally, but then feel selfish for doing this. I don't want to be unfaithful, but I really miss being with a partner (she is not capable of anything). Is it wrong for me to have my needs? Would it be wrong for me to seek some type of service, such as phone sex, to keep myself feeling human so I can continue to take care of her?

Barbara Kivowitz said...

Hi Anonymous. You are certainly not the only caregiver in this situation. And your needs are human, and valid. I'm going to point you to two discussions, that contain many wise voices. I suggest you read through the posts and the comments. I'm sure they will help. After reading them, please share your reactions and ideas.

Anonymous said...

Hi Barbara,
After reading the links, I feel a little better, and don't feel alone in my situation. I am not 100% comfortable seeking intimacy elsewhere, because I don't want to play with the emotions and feelings of another person. If only there was someone nearby experiencing the same,but that would be like finding a needle in a haystack.

Again, this is something that will never improve, so this is a part of our relationship that will never happen again. So, I guess I should not feel bad if I need to take care of myself now and then?

Anonymous said...

I also wanted to add that some of the things that people tell me, such as "everything happens for a reason", and "God only gives the burden to those that can handle it", really want to make me explode. Does anyone else that has a spouse with a severe medical condition feel that way?

Barbara Kivowitz said...

I have to smile a bit at your comment about hating it when people say everything happens for a reason, etc. and wondering if other caregivers feel that way. Every caregiver I've shared your comment with nods in vigorous agreement. And I know a lot of caregivers who would rather hear a recognition that this is damn hard work.

Anonymous said...

My husband and I have been married 7 years and together for 13. He has degenerative disc disease and several herniations in his thoracic and lumbar spine.This condition started just before we got married and has just gone downhill full force ever since. I can deal with the fact that he cannot work, that I have to go to most functions alone and I can deal with doing all the the chores and running around but I really can't stand what his medication does to him. He's constantly nodding out, unable to focus, and worst yet it only takes the edge off his pain so that he's not just rolled up in a ball crying and screaming in agony. I miss my husband and yet while I morn that loss, I struggle everyday with how much more can I take and the selfish part of me that just wants to walk away. I love my husband and I can't stand the thought of him having to go through this alone but I can't help asking what about my life? I know I'll probably never leave but it's a hard pill to swallow that my wants and needs are all completely on the back burner and that's just supposed to be how it goes for us.

Barbara Kivowitz said...

Thank you for sharing your story Anonymous. You have clearly been on your own edge, physically, mentally, and emotionally. I know I and many other readers not only feel for you, but feel with you -- having been living on our own edges.

I want to underline that your experience of this illness matters as much as your husband's. It lives in his body, but you are both suffering. I wonder about two things. Can you talk to your husband (in a sharing not a blaming way) about what this is like for you. You may benefit from the release of talking and he may benefit from the opportunity to support or hold you. Also - can you find oases of support or distraction elsewhere with friends, community, activity, meditation, writing?

I wish you peace.

Anonymous said...

I do talk openly with my husband about my feelings and encourage him to share his fears or vent to me and it does make me feel better but at the same time even though I plainly tell him I don't blame him or find him at fault he feels bad about me having to put up with it. Other people who are not in my situation don't seem to understand and only offer up praise-"I don't know how you do it, I would leave, you're a good person for staying" or I get responses that just reiterate that they really don't get it. I paint and read but it gets me through but some days are just a lot tougher than others to just let sleeping dogs lie. It's like I'm at the crossroad of the crossroad from time to time. I'm strong but I wouldn't wish this situation on my worst enemy after awhile it all just takes a toll. I thank you for your response and thank you for having posts like this because sometimes just reading about others and finding out everything I feel is normal is a huge help and comfort.

Barbara Kivowitz said...

Yes indeed. Knowing we are not alone and that others share our struggles is relief. Thanks for sharing yours

Anonymous said...

Dear poster,
I'm in a marriage of 18 years. And I married for better or worse, in sickness and in health.
Ask yourself, did he ask for this condition? Men are different than us. I've watched my husband go from 20-0, in no time when he had his bypass surgery and cudnt support his family. It tears them down to nothing, makes them feel less than a man.
Maybe you guys Cudnt communicate that to each other. Or maybe you were just blind.
Yes, his illnesses become yours, but if you love him the way you say you do. Wear his shoes for awhile before you throw stones.

Stl well wife said...

As we are deeply entrenched in a current "crisis" cycle in our 32 year marriage/28 year illness my scrambling to "do something" led me to this website... To all of you - been there/felt that. I understand and am sorry for the hand you were dealt.
My husband is the smartest person I have ever known. He is kind, loving, giving. Atrue gentleman. He is also talented - plays any instrument or song after 3-5 minutes, draws or paints, can get power or sound from anything electronic, etc., etc. He will be "Rick" from TWD in the event of a technological breakdown. He went from being a soldier to sick overnight. His physical ailments and pain caused him to become bipolar in his mid 20's. Now at 50+ I look back and can't believe the storms we've weathered over the years!
I am a very pragmatic introvert. He never met a stranger and is quite the charmer. What a pair! I wish I had answers for you all. I can say this... We're going to live until we die. We've made it this far, I'll be damned if I'm quitting now. I will do the best I can everyday. I tell my husband "I love you anyway, my Drear". (Spelling is intentional). I think I hear him stirring so I better close and " see how what kind of day it will be. Noon on a Sunday - not looking too encouraging. As many of you said this seems a place to vent where others understand a little more of why you don't have a "life". I might like to go to a Cards game but it's not going to happen so why waste a minutes thought on it. I try to think as a child of the universe and not dwell too much on this life. Good luck to you all. I wish you peace.

Anonymous said...

Hi, I'm new to this and found this blog. I'm in my mid-50's and my wife has bee sick for 2 years and physically incapacitated for the last 18 months. I really miss the physical part of our relationship (which was great before all of this). My counselor tells me to masturbate, but it is just not the same. Anyone else out there feel the same?

Barbara Kivowitz said...

Welcome Anonymous. You are truly not alone. Have a look at this post and all the comments - you may find others who share your experience, and some good ideas:

Anonymous said...

It has occurred to me that while one spouse has the illness, in my husbands case, Parkinson's disease for 27 years, I am a fairly healthy and active person of 61 years. In sickness and in health are the vows that we took 47 years ago. From my perspective, being healthy and shouldering everything is the easy part. The really tough part is having to be patient and empathetic and sympathetic and understanding all day everyday for so many years and it wears me out. Sometimes I would like to get away for a few days, which is impossible in my situation because there is no one that could pitch hit for me. The result is resentment and anger and hopelessness at times. I know it is selfish to feel that way, but you can't pretend that those feelings are not there and you can't just wish them away or shame them away. So everyday is a struggle. No two days are the same. Up and down. Striving to get a decent balance for both of you. I want him to be as content as he can be with what he is going through. I like contentment myself. I like peaceful feelings for more than an hour at a time. I had started to feel like a failure at my overall caregiving abilities, but then I thought, why beat myself up for being human in an extremely tough life situation. I do think its important to accept that I am not a saint. My husband seems to accept that. He knows I struggle also. I don't think if you struggle with caregiving more than others that that means you don't love your spouse well enough. We are all different with different abilities. Acceptance is a big deal. We all need to keep feeling good about ourselves even when we don't shine too bright at times, just to continue to try to do our best.

Barbara Kivowitz said...

Hi Anonymous. You explain your situation and your solution so articulately, and wisely. One thing I know for sure - no caregiver is perfect. And no patient is perfect. There is no rule book, and what works for one couple, may not work for another. The more we can be compassionate towards ourselves, the more lift we'll have to bring back to the relationship.

You are working so hard, physically and emotionally. If you weren't frustrated, upset, exhausted, struggling (and all the other words caregivers use to describe their state) -- I'd be confused. Acknowledging your experience, no matter what it is, is important. Making choices to give yourself any form of respite, asking for a hand to hold yours, appreciating your vitality -- all this matters. Balance is about ongoing recalibration. I hope your find those pockets of peaceful feelings.

Graeme said...

This is a great forum and I thank you all for your posts, which remind me that many others share my situation. My wife has been ill for over 17 years, but things are better these days for a number of reasons. One of the greatest of these is thanks to a caring psychiatrist who was able to patiently and compassionately support Barbara in stabilising on a suitable antidepressant. Other doctors had tried, but each time she would react in some adverse way. But what a difference now that she is more stable! As other posters have noted, dealing with the physical stuff is far less onerous than the emotional crises, and since my darling has always been a bit on the volatile highly-strung side, her emotional stability has been a wonderful improvement.
Having been at this game for over 17 years now, I consider myself an old hand. I've had counselling, and still occasionally call up a phone support service just so I can say the words that are difficult to say to people at large. I have also developed what I call "assertive selfishness" to get myself out of the house as often as I can for an afternoon or evening of enjoyment. I’ve also had success focussing on things like practising mindful acceptance of how my life has been shaped, and regularly acknowledging gratitude for the good stuff in my life,
It's been very tough watching what could have been our best years slip away through our 50’s and 60’s, with the kids off our hands, the house paid for and a modest but comfortable pile of money. But there’s no travel or holidays for us, and these days very rarely even a meal out or movie together. But that's life and I deal with it the best I can. Despite the occasional plunge to the depths of grief, anger, resentment and despair, I mostly cope tolerably well and find plenty of pleasure in my life.
With love to you all, Graeme

my life

Barbara Kivowitz said...

Thanks for sharing your story Graeme. I do empathize with the hard road you've been on. And I applaud you for finding a path that has allows you to both accept the limitations and also to find enjoyment for yourself. The stronger you grow, the more you have to bring to your life and to your relationship.

Jeannie74 said...

" Life is hard and then you die". Working as a nurse, my supervisor would use this phrase frequently when we were having a hard day. We laughed, agreed and kept on being the caregiver. Little did I know how this one phrase has rentered my life in the form of my chronically ill husband of 54 years. I am STILL a caregiver but I don't laugh much anymore.
This is a difficult place to be in for both of us. Some days there seem to be no answers and I feel like running away as far as I can and as fast as I can. Some days I have thoughts that I share with no one. Some days I am filled with guilt for what I think and how I feel. This is a constant juggling act to balance my needs and his. Some days I am just overwhelmed which brings me to my knees asking God for strength and help and compassion. I cry out because I just don't know what to do anymore! I feel I'm doing everything anyway so what else could there possibly be for me to do? There always is but it is not always easy. So the best advice I can give is to stay close to the Lord and let Him direct your path. Live by faith and not by sight. Lean not into your own understanding. Do unto others as you would have them do unto you. I often think that this could be ME. But I have been chosen to be the caregiver and not the other way around. I don't know why. I don't have all the answers . All I really know is God carries me some days and He walks beside me some days. He NEVER leaves either of us. The bottom line is to seek Him first and know that life IS hard and then we DO die. Eternity with Him will override everything we experience on this earth!

Barbara Kivowitz said...

Hi Jeannnie74. Your description of what the emotional life of a committed caregiver is like is so poignant and so honest. I know many many caregivers will be able to identify with it. And your advice is powerful - I am glad you find your strength in your faith.

Sometimes, when I hear caregivers say that they "are doing everything they can do -- what more can I do," I want to say to them that I honor you for what you do; I know it's already too much and that there isn't any more to be done. You are at the point where you might need to not do more and just be. Be means sitting together, breathing together, remembering together, watching a sitcom together, maybe even praying together. The being may not lessen the quantity of doing that needs to get done. But sometimes the being can infuse the doing with a little sweetness.

Thank you for your comment. And thank you for all you do, and for who you are.