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Caring for a Spouse

Welcome to this online support group for spousal caregivers! Please introduce yourself - Ask for advice - Share your experiences caring for your husband, wife or partner. Talk about ailments and treatments, caregiving and relationship challenges, daily life, your tips for others. Vent, laugh, and come back to this online support group as often as you need to feel less alone. Some featured conversations to help you get started...

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What's New Today

LAJ2012 said...

about 3 hours ago

Great! My husband just threw up all over the bedding that I just changed this morning. I tried to get him to stay sitting up but he insisted on laying down although he had that feeling that he might regurgitate. Lo and behold he jumps up and I did too to try the catch it with the garbage can. Didn't get there soon enough. Yuck yuck yuck!

Before this we were talking about getting a hospital bed for him. Does he have to be on hospice to get that? I'm going to contact the doctor tomorrow.

ggzee said...

about 4 hours ago

Feeling sad!! my husband is getting very weak. Was told this would happen. But being told and having it happen are to different things. When it's in your face and the reality of it hits. What a smack! What gets me the most is when he is telling me how bad he feels. He walks with dragging his feet. Slumped over. So sad.. Please keep your prayers comming. I do believe in prayer. This is tough for all of us caregivers. Prayers back to all. Hugs too.

Sarahanne said...

about 2 hours ago

Sarahanne said...

about 2 hours ago

shescrabby said...

about 4 hours ago

Okay I won't sleep tonight. My husband who is in the nursing home for almost a year now and he is making tremendous amount of improvement within the last couple of months says to me on the phone are you sure you want me to come home someone said maybe your wife doesn't want you to come home that's why you're still here. Now does that make me feel bad or what here I am almost having a nervous breakdown went and got on depression pills and anti-anxiety pills so I can handle this heavy load that I am carrying with all the other crap on my plate that I have to deal with and now I have someone saying this or how many people are thinking this. Insurance and Medicaid are refusing to let me take him home overnight unless I self pay until the end of May. Do I have to explain myself to every person I meet. Not enough I'm lonely depressed and have too much to do now I've got people looking and judging me. I feel bad enough as it is not being able to care for him myself. I give up....

Beyond Tired said...

about 3 hours ago

Sarahanne said...

about 2 hours ago

Welshmam said...

2 days ago

Hello first visit here my Hubble became disabled 14 years ago after suffering a stroke have had several other problems since we know how hard it is for him and a lot of press he on all the family ,thankfully we have 3 great kids just like to post this .

annawalks said...

2 days ago

Hello fellow caregivers. I've been reading through some of your posts, thank you all for sharing. It truly helps to see that I am not alone.

My husband and I have been married for 22 years. When he was 12, he had lymphoma. That was 39 years ago. Back then I guess they just blasted patients with every kind of chemo and radiation they had, much less of a science at the time. But the treatment saved his life, cured his cancer, allowed him to grow up and meet and marry me, to have 3 beautiful children...God is good.

Then 7 years ago, he became very ill. It was his heart failing, out of what seemed like nowhere. With medications the doctors were able to help him, but he was hospitalized several times over the next 2 years. So when his employer had a workforce reduction, I suppose it only made sense that he would be one of those let go. We didn't think about it at the time. He signed an agreement, accepted his severance.

He tried to find work, but his heart failure was becoming more and more severe. The medications stopped working. He had an ICD placed. He couldn't work. A little over 2 years ago he won a 3-year battle for disability payments, and then was basically dismissed by his local cardiologist who felt he couldn't help him any longer. He referred us to a hospital that had a transplant clinic, an hour-and-a-half away.

We visited the clinic every couple of weeks. Medications were changed that helped a little, but we were told the grim truth...the cancer treatment had destroyed his heart. The cardiologist likened it to leaving a garden hose out in the sun too long. It shrinks up, it's no longer flexible, it's hard and brittle, that's how he described my husband's heart. He needed a new one.

A year later we received more bad news. He was not eligible for a transplant. You see, a transplant means taking anti-rejection medication for the rest of your life. Those medications cause nerve pain. One of the chemo medications my husband was given left him with such a high level of nerve damage that the clinic would not recommend him for transplant. The cardiologist there told me he'd had patients with such severe nerve pain after transplant that they had asked to die. And there's really nothing they can give to treat that pain.

This past September, things got really bad. I didn't know it by my husband had been abusing his diuretics to hide from me just how bad things were. But I knew something was wrong. At our next clinic visit the cardiologist took one look at my husband and said, "You''re not going home today." 3 weeks later he did come home, labeled with Class IV heart failure, with a year or less to live. He also came home with a PICC line and 24-hour IV medicine. It made him feel a lot better, for awhile. Dealing with changing the IV became easy, 5 minutes each night. A nurse came weekly to change his dressing.

In November, my husband was given a choice. He could choose to receive an LVAD, a left ventricular assist device or heart pump. It would go into the left side of his heart and pump for him. Most people receive this device as a bridge to transplant while waiting for a heart. For my husband it would be a destination therapy. It is risky. It could fail on the operating table when they turned it on, within the first year, or maybe he'd be like some who lived 10 years or more with the device. The device is controlled and powered by units outside the body. He would have a permanent "hole" in his abdomen with a drive line coming out. He would need to be connected to power or batteries at all times. There would be such a high instance of infection that it would almost be guaranteed to happen. GI bleeding that sometimes can't be stopped and often requires re-sectioning of the bowels is common. Someone other than himself would have to change his dressing around the exit site. Every day. For the rest of his life.

The clinic paraded a lineup of LVAD patients in front of us, each with positive stories. Each one always with their spouse. I felt like I was at a used car lot. Early on I sensed that they were only having us talk to the success stories.

This is where things get tricky. I have this really bad habit of thinking everyone else should feel the same way I do. You see, if I ever had to make that decision, I would choose against it. I'd make plans, live the rest of my life as best I could. But without really any input from me or our children, he opted for the LVAD.

He had the surgery on January 25 of this year. As I'm sure you can tell, it's open heart surgery. He was in the hospital for 3 weeks. At first we thought he'd come home after two weeks, he was doing well. Then all of a sudden he wasn't. He had a pericardial effusion. A large amount of fluid collected between his heart and his pericardium. They did emergency surgery to remove the fluid. It was his 3rd such surgery in the span of 1 year. It was scary. But he made it through and came home the day before Valentines Day.

There was so much they didn't tell us. For example, it takes 45 minutes to do a dressing change on certain days, 30 minutes plus on others. Every day. My husband has very sensitive skin. We've tried so many different adhesives/bandages that I feel like I'm an expert on them. It takes an hour-and-a-half for him to have a shower, start-to-finish. But he's lucky he has a clinic that allows LVAD patients to take showers, some don't. The LVAD is doing an amazing job. His color is back, his other organs which had begun to fail are rebounding. But it has done nothing for his confusion and memory loss. Nothing for his motivation and depression. He is capable of getting up and walking a 5k, but he won't. He just sits on the couch, laptop in his lap, tv on in the background, just like he did the few years leading up to all of this. He complains about pain in his back, says it's why he doesn't walk. Complains of his severe neuropathy pain daily. He's short with me and the kids, who are 11, 14, and 18. The oldest graduates this year. It should be a really happy and exciting time for her. Instead she's my backup for doing the dressing changes. He forgets. A lot. Yells at me when I drive somewhere, gets upset because he thinks I'm going the wrong way, he's just confused. He asks questions that were answered five minutes previous, gets upset if we tell him, "We just answered that." This afternoon he gave me some requests for our weekly meal plan. I left to go grocery shopping, I texted him to have the boys come help me bring in the groceries, I made the dinner we had planned for tonight. He loved it. 5 minutes ago he asked me if he had told me what he wanted to have for dinner this week.

I coordinate all his doctor's appointments, his clinic visits are still every other week, I miss an entire day of work each time. I had to be with him the first 6 weeks after he came home. I'm blessed my employer allowed me to work from home during that time. I order his dressing supplies, which come in a month-at-a-time. They are huge, these dressing kits. Storing 30 of them is still something I haven't quite figured out. I have what amounts to a trauma cart in our bedroom with gauze and bandages and sterile gloves and alcohol wipes and skin prep and tape and foley anchors... I have to dose his medicine, he's too confused to do it on his own. He's a diabetic, I have to count his carbs for every meal, help with his insulin dosage. If his sugar gets too high, he really gets out of control.

I work 50-60 hours a week in a very demanding job. When I get home I have just enough time for dinner and homework and laundry and dishes and his dressing change. I have no time for me. And that's with the kids helping me.

I'm finding myself bitter. Angry even. I feel like I've been handed a life-sentence. It's a horrible thing to say. Most days I'm fine. I find strength in God. But sometimes I slip into this anger and frustration. It's destroying what little relationship we had left. I feel like I should be allowed to love him and be grateful for this life-saving device he has, but also be allowed to hate the situation it's left us in. He can't seem to separate the two. If I'm tired and say the wrong thing while helping him, he takes it personally.

It's only been 3 months. I keep waiting for things to get better. Please tell me that it will.

1 day ago

inthisalone said...

1 day ago

LAJ2012 said...

3 days ago

Looks like a night that I'll be sleeping on my couch. Husband is in our bedroom smoking. He's in that mood where he's daring me to say something to him but I'm not. It's not worth it the trouble. Hopefully his mood will improve by tomorrow night. Nights like this it's hard to ignore the bad attitude and tell him that I love him and I'm here for him. Nights like this his response would be something like, "NO you don't." or "Yea, whatever."

Since the time I started typing this I learned that my husband has run out of his liquid oxygen. That could be why he's been so agitated. When he runs low that limits his portability. And tomorrow is my son's bday party that he was supposed to come to and now he won't be able to. But I'm sure he's more bothered by the fact that he can't get anymore oxygen until next week. Oh how I wish he'd keep track of that. If he knew he was running low he should have called for me or asked me to. Now he's got to go the whole weekend in the house and he's going be in a funk.

Drowning said...

2 days ago

1 day ago

MissAnnaC said...

4 days ago

Hi. I'm new here. My name is Anna, I'm 33 years old, and married to my husband, Kyle, 35, for 11 years. We have 2 daughters, ages 7 and 1.

Kyle has stage 4 cancer that is rare and has been going through medical stuff for the last 5 or so years.

I used to go to a caregiver support group but it fizzled away and then having a baby and working it's just not happening but thought I'd give an online group a shot.

My current problem is, how do I say this, Kyle's goal is to do treatment as long as he can knowing it's not going to cure him, just give him as much time as possible. Every 6 weeks he goes in for scans and each time the news gets worse and worse. I feel myself slowly pulling away from our relationship so I can try to protect myself from losing him.

I can't talk about this to him. It would break his heart.

Anyone else go through something similar? Thoughts? Advice?

Sheila1944 said...

1 day ago

Sheila1944 said...

1 day ago

DaniOklahoma said...

5 days ago

Hello... My husband has multiple health issues and is no longer able to work. We have been married almost 5 years and he became disabled 10 days after we got married. I am his sole caregiver and am majorly feeling the stress, emotionally, physically, and financially. I don't feel that I have a support group of my own, no friends or family to talk to that will understand my daily struggles or that are willing to help with some of the burdens. I try to be a good, loving wife, but here lately I am feeling like a terrible person because I am just tired of dealing with the stress of my daily life. I truly wish sometimes that I had never married him. And, I wonder daily what I did to deserve this life. I am about to hit my limit and lose what little mind I have left.

MissAnnaC said...

4 days ago

NeedHisStrength said...

4 days ago

LAJ2012 said...

5 days ago

Good Afternoon...For those who need a reminder...

Joy Comes in the Morning

When you wake up each morning, God sends you a special delivery of joy. It comes knocking at your door. When you get up in faith and make the declaration that “this is going to be a good day,” do you know what you just did? You just answered the door. You just received the gift of joy that God sent to you. The problem is that some people never answer the door. Joy has been knocking for months and months, years and years saying, “Come on! Let me in! You can be happy! You can enjoy your life!” Make up your mind that You’re going to answer the door for joy. Wake up every morning and say, “Father, thank You for another beautiful day. I’m going to be happy. I’m going to enjoy this day. I’m going to brighten somebody else’s life. I receive Your gift of joy, today!”

A Prayer for Today

“Father, thank You for joy. Thank You for peace. Thank You for walking me through the difficult times. I choose today to answer the door for joy every single morning so that I can walk in the strength You have given to me in Jesus’ name. Amen.”

shescrabby said...

5 days ago

NeedHisStrength said...

4 days ago

GoldenPoppy said...

6 days ago

Feeling sad and know that you all will understand...everything just reinforces that Ed is gone. I know that he died eight months ago, I know he isn’t coming back. I sold a lot of jewelry and closed his cell phone today...and I can't stop crying. I haven't cried like this in ages.

Sheila1944 said...

5 days ago

NeedHisStrength said...

4 days ago

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