Feeling overwhelmed at caring for my husband of 42 years who has COPD. Anyone understand?

Sadly, his illness has morphed him into a persona quite different -- and not pleasantly so -- from the man you fell in love with and married. As if that all-pervasive ego-centrism weren't difficult enough, dementia seems to expose the baser side of the sufferer's personality, making coping with it it even more challenging for loved ones and caregivers. Going through it myself with a husband 8 years older who suffers from an alcoholic dementia, and the things that keep me upbeat and sane are exercise, contact with dear ones and friends, activities that I enjoy, and the feedback, understanding & support of groups such as this one. Do make every effort to take care of YOURSELF, and don't feel at all guilty about it -- 'cause if Mamma ain't happy, ain't nobody happy!

I am almost in the same boat hang in

Thanks Leakey just for being there and not judging me!

Find yourself a boy FREIND and enjoy the good years still ahead I think you have done all you can make sure he is comfortable but it's time to think of what you want

My husband (74) was diagnosed with copd 12 years ago (I am two years younger) but the last three years has broken me... I am physically/mentally/ emotionally exhausted!
I can still cope with the extra work and all the decisions which have to be made
but the emotional side is really hurtful! It's got to the stage where he is just taking me for granted never acknowledges my tiredness or appreciates my efforts. I feel so lonely, even though I have two wonderful sons who try and help as much as they can but I cannot talk to them because all they see is their Father's illness. It's all about him and my husband is all about himself! I tell myself that I am feeling sorry for myself and I wake up every morning wanting/trying not to let things get to me but my nerves are shattered because he sighs and cries out morning and night! I am averaging 3/4 hours sleep a night! I still love my husband, we have been married 49 years but to wake up and have one day like it use to be would be wonderful!

Doreen blue wrote: "I let myself burn out by not taking care of myself, by being so sad and burdened by my husband's condition and my inability to meet all his needs that at the very end I just couldn't care any more."

I call this "caregiver numbness." It's a common response to the intensity of the caregiver experience - and not that different from being "shell shocked" in battle. I do think it's a defense mechanism that allows us some self-preservation - otherwise we would be unable to cope with what we needed to do. Nobody should ever feel guilty about the "numbness" because it allows us to survive.

I'm with you lily04! But it would have to be a cruise for a day because when I have caregivers come in from an agency for 3 or so days, the bill is over 1000.00! We can't afford that. Great thought anyway!

Daffodilgal, I tried to start a daytime support group through meetup for people who care for their parent as I'd found most groups in my area (south Fl) were for spouse caregivers. I got absolutely no interest from cgs of parents though a couple of spouse cgs did respond. I referred them to the groups I knew of. I did not know of any at noon or evening; you are right that that would fill a need. You could consider starting such a group through meetup but be aware you have to pay an organizer's fee at first. If you get no takers they will refund you the fee. If you get takers you can have them share the fee.

I would say if you are worried to that extent about your person being alone then they should NOT be alone. This society is not arranged for people who cannot afford help at home unless they are destitute; then Medicaid steps in with a little help, and that is not enough. Sad situation.

I've been trying so hard to find a support group that meets at noon (I work) or early evening. There are none to be had in my area. It is so gratifying to have this website, it's my primary go to for information and understanding.

It is so difficult to worry constantly whether your loved one has fallen, etc. at home with no one there. But we can't be in two places at once.

I believe that you have more support in Spirit then you know...You do not walk alone...............

ditto to all the wonderful remarks, you are still you somewhere in there

Speaking of the church...my aunt & uncle have attended the same one for about 50 years and were quite involved in the past. Now that they need help no one from their church has lifted a finger, called or came by to visit. Yet, they have to be watched or they will give away their last dollar to the church.

Wow, if you have church and other family members you are really lucky. My parents church has done nothing, and never asks any older members if they even need help. I do feel overwhelmed like you - it's really hard to make plans to do any activities, and it starts consuming your life. See if your town has a caregiver support person and they may have help you didn't know about. Just someone to sit with him while you go to the park, library, classes, etc. would help.

lillybo, Yay! No, not selfish, just true and healthy and now you can have your own life as your family said. Have your life and I hope it is a good one!

As someone who has cared for my father -in -law my brothere -in -law my neighbours for so many years I am free since last Tuesday, I have looked after my husband with Alzheimers for 12 years.He controlled me all my married life and now I am free. It may be selfish to say but my family keeps telling me eveyone has responsibility for their own life.Fight for your freedom

When you say your family is supportive... Have you asked them for help and trained them in caring for their father? I know the advice is to take time for ourselves but as I know well, that can cost a lot of money and we're not sure of the care given while we're gone. Please ask for help from people who love your husband. I totally understand; I could (and do) scream at the universe for putting me in what can feel like prison at times, and it is not my mother's fault. No one's fault, but it is true that it is totally overwhelming, often. If there is help to be had, take it. Some of us don't have anyone to ask and have to pay big bucks for it. This country has not arranged things to be humane for the elderly or their caregivers. That MUST change and I hope I and many here will work for that when freed from our caregiving obligations (if we make it that far, honestly).

Caregiving is a tough job to say the very least. I deal with 2 family members with AZ and dementia. Drives me insane most days. Thankfully, I am getting a break today...going to the Smoky Mountains. It has been a long while since I've been able to get away. Hope everyone gets some sort of break soon. We all richly deserve it.

Let's all get together and go in a cruise.

Hi Niloga I have read all the posts on here and I come from a different place. My father passed from alzheimers related complications and I sit here and look back at the countless years we cared for him at home. They were the most horific years of our lives, you are so caught in the deterioration and all that comes from it that life ends at the point you become their carer.With all due respect to comments from people like Grammy, you could have 5000 friends and family, until you live the life with someone that unwell 24/7 you can not understand what it does to you. It physically and emotionally destroys you. But as I started saying my father passed less then a month ago and it was over eight years since diagnosis and really god knows how long before it started. It jas been years since we were able to communicate with him on any level. No doubt it has changed us forever, no doubt there were hideous times. But now that all is said and done he has passed and we know we took the best care of him we possibly could as when he was well he loved us like no other. Would be change anything now going back? No. He was worth all the pain and heartache and tears because he would have done the same for us. May he rest in peace forever.

Niloga, I am a little late coming to this thread, so it is obvious that by now you surely do know that there are more folks who understand than you may ever have imagined. And despite how much "support" you have for your situation, being the primary caregiver for anyone IS overwhelming and lonely!

Yes, there are always worse situations than the one you're in (be it caregiving or anything else), and counting our blessings is most definitely a helpful practice - BUT admonishments to do so shouldn't be the response to yours or anyone's post here. [I tried to scan most of the responses, and I do see at least one other person who spelled that out - thanks, BoomerOnHold! Others alluded to it as well by noting the importance of knowing that your feelings are validated - kudos to all of you, too.]

That said, I don't think even the folks who did do that (tell you that you should be grateful) meant to be as cold or unsupportive as they may have sounded. Most everyone here can empathize, sympathize, and understand what you are experiencing on some level and I do believe they try to be helpful in the best way they know how. It all comes from the heart, but it is also usually off the cuff. You take what you can use here and filter out the rest.

Again, this gig IS overwhelming AND lonely, no matter your personal circumstances, including the size or helpfulness (or lack thereof) of your support system. And this site is a part of that support system. I hope you have been encouraged by it. Hugs and prayers for you!

Yes, I so understand your issue. My husband has been ill since 2006, and he's been paralyzed and in a power wheelchair since 2008. I truely understand that feeling about have church family and regular family around you and yet you still feel so alone. I am blessed to still have my husband with me but being his caregiver has changed our relationship. I miss being a wife to him. It may sound funny that I feel lonely and he's here but I'm lonely for our kind of life we had before he got sick. Family has been the most disappointing, implying they are there for you but in reality they are here for us when it is convenient for them. Instead of surrounding us and helping with things that they know we need help with, their excuse is "if you need something, you have to let us know or ask us" I come from the school of thought that when you see a need, respond to that need. Not having to ask for help all the time, is so comforting. "Asking family gives them the option of finding an excuse. You don't schedule the act of taking care of your family, you need to be there to comfort and support them before they have to ask. That approach makes caregivers feel safe and cared for too.

I am the only person caring for my mother( I am the only child) 93 wheelchair bound and little start of dementia and my husband 72 with two brain injuries with some dementia. Our whole family is happy I am able to do this and they tell me all the time they don't know how I do it. I am glad the Lord is with me or I would be wacky. Love to you all. I feel this is a test and I'm going to pass it.

My husband has dementia, altzheimers, type 2 diabetes, and a choking disease where he s its and chokes on just about everything he swallows
He sits and gags on every bite..he is sched for an endoscopy but not for another month...do not think you have it bad 'cause dealing with all these med issues he constantly falls because of high blood sugars...I am wanting hin to go into a nursing home but we are only on ss w small pension he wasted his full retirement on lottery tickets. .35, 000. Gone down the drain or shd I say to the lottery commission and I w not hive up my only ss income to a nursing home. Its a vicious circle.....cannot buy a life ins policy over 25, 000 since nursing homes take anything over that amt since that is an asset and they take that to pay for him to be a patient. ..its...hell. nothing but h*ll

I do understand as I am the caregiver to my husband who at age 57 has both Lewy Body Dementia and stage 4 prostate cancer. It is a lonely life, all consuming and no one understands unless they are in these shoes...I feel for you

Your feelings are normal, primary caregiving is overwhelming and you can feel very much alone as you take this journey of caring for your spouse. I would consider getting some paid home health aide assistance to conserve your energy and health. Taking care of a spouse is a long term not a short time care
program. You will burn out fast if you don't set up a routine which works for both of you.

Good luck.

Yes, we certainly understand. Having friends and family near and relying on God is great. If you don't, join a support group or start your own at your church. These can be "venting" sessions, crying sessions, and just plain fun. You must remember the #1 rule of caregiving: Take care of yourself first, otherwise you won't be any good to your loved one. It's like the flight attendant tells you, "Put your oxygen mask on first". It's very difficult to put ourselves first because we feel guilty, selfish, like it's wrong, but it isn't. It's necessary. You are in our prayers! God bless!

I am caring for my Dad who has parkinsons and now lung cancer post my mothers death 6 weeks ago. Before this I needed to quit my nursing position to care for both him and Mom. I too can relate to where you are at. It is so hard to be a caretaker.... the loss of your own life.... your fears for them when you are out at an errand or doctors visit for yourself or one of them. Dealing with Family who tell you they want to help yet do nothing unless you ask them and then you feel like your taking time from their lives instead of them coming with a casserole or dropping by and saying its time for you to go to lunch I got Dad and Mom. You are so not alone... We are so many more than you know. If we can help with words and hugs please talk to me.

I do know how you feel. My grams is getting worse with her dementia. My family does not get it. I have her on in home Hospice care right now. Cried on the social worker's shoulder this morning, reviewed the last few days. The are coming out to meet with my dad and uncle tomorrow. She is a risk to herself. Even with family support it feels beyond my skill level. Especially if I cannot sleep. I have caregivers for a few hours each day, but it is never enough time.

Alone we are not, loneliness is just a feeling. Find someone you can talk to, spew the good, bad, and ugly and allow for feeling guilty, hurt and angry. They are normal. It is a difficult task to care for a loved one who is ill. All consuming. We need to be honest with ourselves about how we feel and what we think.

I send you blessings.

You had a fully alive partner in plans, hopes, dreams. Now you don’t, and it’s not going to get better. You two were bonded in all of life’s goodness, and also could share hard times together. Now, you live daily, hourly with vanishing vestiges of your full life. Those who have replied with wisdoms about their God, are fortunate. I have tried to invoke God, but cannot always do so, just as lullabies and platitudes drive me insane. I am sorry for the pain of having to watch your husband decline. Who knows what he is experiencing? Does he, or can he, consciously release you to allow you time and space to develop a healthy life for yourself? Or does he require your intensive attention and care? His own psychological requirements may put him in depression and bitterness, which you can’t help but react to with your own downward spiral. If he cannot free you enough for your own well-being that allows you to develop healthy habits without guilt, then you must begin to train yourself to understand “in your head” that the downward spiral is hurting your heart. It will come down to your own literal and figurative heart wanting to die with him. Sometimes we can’t stop that process til at the bottom, we face the hard truth. In the end, your body will tell you whether you want to go down with him (some do that, it can be very romantic and makes great novels and movies), or whether you want to reach for life outside of him. I always feel the latter is a living betrayal of the kind of devotion I needed to believe in. But nobody can experience that for you. You were cruelly denied some good years with this man. God cannot even take your inner battle over for you. Perhaps the deepest faith is confirmed when bleeding from our deepest denials. I have no idea what truth is about God or faith, but find that life force seems to affirm a hope. I often pretend that my LO “would want me to thrive.” Then again, neither have I been taken down to where I no longer want to live for more than say, an hour at a time. I have never planned my own demise. I do face an incredible fear, unspeakable fear, of being without my husband. I do not think you should feel guilty for feeling the way you do in spite of the support you seem to have. I feel so bad for people here without any support whatsoever, I think to them they feel you are in quite different, fortunate shoes. Yet, your own despondence is not relative to them. It is yours. Our wealthiest celebrities who can afford all kinds of support and have deep close friendships, still fall to the realities you are facing. Sometimes support blocks our facing the fundamental truths about our own individual life. Much as the holiday season throws some into even deeper desperation. Try this. When you are alone, try to feel your heart breaking. Cry and witness your sorrow. Ask yourself what you need. If it is for your husband to be 100% again, you will weep even more because you will know he cannot be. Stay with it. What do you need beside that? You may not get an answer right away, but make it a habit to feel your heart break. Breath through it, as though your breath will get you through the pain of feeling you will die. Like Lamaze without the joy of birth. Do not beat yourself up that nothing comes right away. But feel the dignity of your facing your unknowns. In there I hope will be some guidance. Find your life’s grasp as you helplessly witness another’s slow passing. My tears seem to be also for you and other responses I read today.

Your situation sounds almost exactly like what my own mother is going through, taking care of dad. I have finally convinced her to have her doctor recommend homecare for him, which includes visits by a rn, and he also gets physical therapy there at home (strengthens and helps with his balance), and an aide also comes out 1-2 times a week and helps with all the housework and also sits there and listens to him tell his stories. This is a huge help for mom too,and she can actually schedule a trip to the hairdressers or wherever while that aide is there caring for dad and doing a few things like the laundry one day, or vacuming another day. Dad loves the variety of company, the rn, pt, the aide,and Mom gets a break during their visits to nap, do a puzzle, go somewheres.... Mom got to the point of what is called "caregiver burnout" before she'd let me help her arrange these visits by others. I go to their house for 1-2 months at a time also, to help her out with everything. My sister goes a few times a year, my two brothers are too involved with their selves to realize that a vacation visit of a week or so there does NOT help, actually harms because mom stresses over the cleaning, cooking, being sure dad is watched, the meds, and so on. My recommendation: talk to your doctor, have him RX homecare, including rn, pt, AND an aide. You'll be so glad you did. Hang in there, but DO talk to your doctor. Otherwise pretty soon you will be so worn out that you won't be able to care for anyone, including your own self. Try the homecare, you can cancel it at any time, tell them to stop coming and they will stop. Try it. Talking to people, socially, is lovely, but won't physically help you with your workload. Medicare covered all this homecare for my parents, and the homecare company makes sure everything is covered before they start their visits,a nd they let you know beforehand if something wont be covered. Its a win-win situation.