Losing her

[caregiver]

I am a 24/7 caregiver to my wife of 38 years who is dying of cancer. I am exhausted emotionally and some days are a real struggle to keep myself focused. I never expected to be a full time nurse but I am now.

 

I just joined this site. Not sure if this is even the right place. I would like to find friends who have gone through this same or similar situation. Sometimes I just need to vent, other times I think my own experiences can be helpful to others.

 

And I need to communicate with others, as I can not go anywhere and I have very few outlets. My best friend is in the same boat, taking care of his dying mother so my social life is zero. Unless you count conversations with doctors and nurses who know me and my wife as we spend as much time at the hospital as we do at home.

[DrReplyInRhymes]

I would imagine a support group for this exists, and probably an online one too,

For you mentioned you have no time anyway, but want to communicate with a few.

In order to want to communicate with others, you have to offer something they want,

Be it time, money, kindness, empathy, or conversation, even if it's only in font.

[NTV]

Man I've never really been in your shoes. I honestly don't have any Sage words of wisdom to give you. But I'll listen or rather read I guess. Vent away as much as you need man.

[DrReplyInRhymes]

Sorry for the double post,

 

It seems you mention your best friend is in the same situation as you,

Does your friend not count when looking to talk to someone else too?

[privategal]

I'm so truly sorry. It's OK to feel selfish sometimes (you aren't selfish) because you feel alone, you are lacking fun, you are losing your social life....those things DO hurt and affect your quality of life on top of deep emotions of watching your spouse suffer.

Does she have Facebook friends, old college friends who care about her that may be staying away as they aren't sure what to do or how to help or assume you've got it covered?

If so, invite them over for a movie night so you can go for a Beer or two and get a little break.

Also maybe hospice?

My hometown has a FB page that's dedicated to JUST the patrons of our town so you could find and post in yours?

Also if you aren't religious that is fine. Unitarian churches are for any and all beliefs even pagans and anything under the sun so if you find a local one, reach out to the minister, some folks likely can help, or you can have free counseling from a non judgemental source.

It's OK to think of you too. It's on to say some days what about me?

I know you love her and want to care for her so don't apologize or explain. You need to vent and need help

 

Prayers for you both.

[caregiver]

Yes, there are groups. I can't get away to go in person but I have posted on a cancer website. The stories are just heartbreaking.

 

I have to administer medicine and fluids several times a day. Mt schedule really is 24 hours. I get a little break between 3pm and 7 pm in between and today spent the time working in the yard and garden. From 2 am till 8am my son cover things and I sleep.

 

I keep a running notice on FB for all of our friends and family. Otherwise I would be making constant phone calls. I think we have close to a dozen trips to the Emergency room and almost as many hospital stays. They range from a week to a month in duration. Latest problems have been infections. She has this same bug that just won't go away. They can only knock it down for awhile.

 

So we keep track of her temp and sugars and she gets labs twice a week. I have been trained to do the IV and pumps and stuff at home so the nurses come to the house almost daily now. Its still cheaper than a hospital stay but it took over a year for me to get the IV stuff we needed. Up until just a few weeks ago we made daily or every other day or third day trips to infusion.

Giving us the meds at home makes it easier as getting her up and in and out of the car is a chore. My son lives with us and he is a big help but it is still hard on her to be moved. She is unable to walk or stand. Just too much weakness from all the hospital stays and she had some nerve damage during one of her surgeries. She lays on the couch 24/7 except she can sit up for a few minutes at a time.

 

Hospice turned her down. She is getting TPN which is a thousand dollars a day and they don't want the bill. Our copays have ranges from several hundred to about fifteen hundred a month. So far we are able to manage.

 

The PT nurse is back and working with her to try and get her strength up. I have no idea if she will be able to. The last couple times at the hospital she seemed to just give up a few times. She is just worn out from all the pain and suffering. Lately she is actually improving. A big part is she is now getting a lot less pain meds and anti nausea meds. Those things make you confused and tired and the lights were on but nobody was home. And for the first time in months she is pain and nausea free for multiple hours. For months it was constant nausea and sickness. Really makes you feel helpless when there is nothing you can do.

 

Since they lowered the doses, she is alert, awake and able to watch tv and talk with friends on the phone. She has 4 tubes draining fluids. Those need a lot of attention. My son keeps after it at night while she sleeps and I do it during the day.

 

Everyone says what a great job I am doing. And then they tell me to take care of myself. I don't know what to do. My escape is working in the yard or garage but I am unable to do much else.

 

My best friend is unable to get away even less than me. He works full time driving at night and all day is taking care of mom. Somedays his sister helps out but she is a flake and not reliable.

 

My wife's best friend comes over a few days a week and helps me with the housework. I tried to hire her but she is also very busy.

 

This started 8 years ago. The last 15 months have been very intense. She is totally dependent on me for everything. We both retired early because of the cancer. We had two years of time camping at the coast with the kids. Those were our best years. This is our worst. She is dying and sometimes I feel like I am dying also. I may have nothing left when this is over. And I am not even sure I will care.

[Sunkissedpatio]

Firstly, I am so sorry for your situation I can relate on some levels having been there for my ex-brother in law who lost his wife to cancer earlier this year. I am also sharing caregiving duties with my father for my mother who has Alzheimer's. I understand the predicament you are in all too well, a lot of times people are so concerned with the ill person that they forget about the support that a caregiver is also in desperate need of and relief as well.

 

My ex brother-in-law is a musician as his part-time job and we had made it a point to insist on being there for them in whatever capacity they needed us. It took him a very long time for him to accept our help, and I know much like in your case (the caregiver) it is extremely hard to ask for help. But take it from me we really pushed to be there for them in their time of need and he finally took us up on our offer and we did what we could to relieve him as much as possible when he needed to play his gigs on weekends or just needed some time to himself and we would accompany our sister in law to chemo sessions etc.

 

I encourage you to ask for relief from those you trust and who have offered, just to give you some time away and to reconnect with the outside world. It can be daunting taking care of someone 24/7 and your moral dilemma plagues you of "but it's selfish of me to want time away" when she is dying and it really isn't. We all give but also need our time to ourselves too.

 

As you must have already found out, especially in the case of cancer a lot of people who initially wanted to be there for you and your wife must have disappeared over time because they couldn't handle seeing your wife/their friend, deteriorate and suffer. And there isn't much you can do about those people, but accept help from hose who offer because you would be surprised how willing they are to do what they can to help.

 

For a while we felt intrusive by continually offering but it wasn't until we were taken up on our offers that we could talk openly about his needs and our true willingness to help.

 

I can tell you we would have done much more to relieve my brother in law had I been asked to.

 

You have been going though this for a long time and you need a little bit of balance back and to take care of yourself.

 

Both my sister and myself try to relieve our father now from his duties because we understand how draining it can be.

 

Keep posting here if you need a little escape and social interaction, this is a wonderful community of very caring folks who are more than willing to bounce ideas and advice. Integrate yourself in other topics in other sections and offer your advice in whatever realm you feel you have the capacity and sooner than later you will see how many people are willing to help when you are in need.

 

And do try to reach out for some help from friends and family... you need the break, your wife already knows how devoted and what a wonderful husband you have been to her despite how advanced the illness is.

 

As per not wanting to go on after all this is over I am afraid I can't offer much on that topic. I feel my father would do much of the same, he is so keenly devoted to caring for mother and has been so consistent in his care and very lovingly doing all he can to be patient and loving (my father is not a very patient person but he surprised us all) but we still try to relieve him as much as possible because he needs his time away to keep his sanity.

[caregiver]

She was a blind date and actually did not like me at first. But we hung out together cause our friends were a couple. I sort of just became acceptable to her. Everyone says I out kicked my coverage. I am just an avg geek. She is angle faced and very small. She would melt men's hearts at first sight.

 

Over 38 years we raised two daughters and a son. All of them really have their lives together. The girls are married and each has a daughter of her own and my son is working on getting his bachelors degree. I am ecstatic over the guys my daughters chose. Both are really good men and they hit it off real well together. The four of them spend a lot of time together. She was a stay at home mom. I credit her with how wonderful our family turned out.

 

She could have had her pick of many men. But all she wanted was a house with the picket fence, children and a station wagon. I gave her all of that. We even built our own house. The soccer,football,cheer, mom.

 

With newlyweds, people say the constant affection wears off after awhile. With us it never did. Unless we were apart, there was never a day we didn't express love for each other. Not sex, just hugs and kisses or cuddling or sitting together watching a show.

 

We both were into crafts. She taught herself to knit and stitch and sew and paint and you name it. She loved making the kids costumes for the holidays.

 

We had our problems like everyone does, but we worked thru them. As frustrated as I got sometimes, it was never enough to throw away a good marriage and family over.

 

It always made me feel special to be out with her. Men would get beside themselves over her, and it made it even worse when they realized she was with me. A geeky dweeb with an angel who looked like a runway model.

 

Even now with all the tubes and pumps and bandages she is still very pleasant to look at.

 

It was not a perfect marriage, but it was good. Now we are both struggling with reality.

I will continue this later. I have to go mix her TPN and some other meds.

[caregiver]

Sunkissedpatio, you do understand where I am. Maybe reading about my situation will help you understand your own fathers situation also.

 

privategal, we did have friends and family over a short time ago for the afternoon. It really does help. And for her seeing the little kids have a great time playing in the pool made her smile. We put her in her reclining wheelchair and rolled her out to the deck so she could socialize with our families and friends. We will do that again soon.

[caregiver]

So now we have a very painful, frustrating, just awful reality. She loves her life and her family and friends. God is kind of a prick to make her suffer like this. I have told him so many times. Why her? She never even said bad things about people. She cursed once while camping, I think she burned herself with a marshmallow. Everyone was aghast! Her, cussing?

 

I don't know anyone who knew her and didn't love her. She really was the kind of lady people just wanted to be around. She volunteered for cancer relay and she would spend the night with them at a school while they all walked the track. She easily made friends. My own friends were confused. The geek who girls in school wouldn't give the time of day to ends up marrying one of the best.

 

We spent 5 of the last 6 weeks in the hospital. Each time I take her to emergency it because she is running a fever (infection) or she is so sick and in so much pain there is nothing I can do. And each time I take her there, I wonder if this is the time I won't be bringing her home.

 

I have my own breakdowns almost daily. I usually hide in the garage. I don't want her to see me struggling so much. I have on occasion not been able to hold it back. One time in the ER leaning on her bed. They got everything plugged into her and one of the doctors just talked to me about DNR. Do not resuscitate. He was also kind of a dirtbag. He released her and three times I had to bring her back within a day.

He was actually pissed that I brought her back. He basically wanted me to take her home and let her die.

 

Its not my problem if he is not a very good doctor. His plan for her home care did not work. I have learned more than I wanted to know about our healthcare system. They will never come out and say it but a lot of decisions are financial. And medicare has hard rules that don't always make sense in some cases.

 

Doctors are pretty smart but some were "A" students, and some just barely passed. Fortunately we had enough of the A students to keep her alive this long. She was given 5 years. So far it is 8 years. All doctors nowdays are so specialized they no longer see the bigger picture. She has several, and they are very good at their specialty but the overall picture is up to the patient or her caretaker.

 

We went thru several hospital stays where she would go in really sick, they would give her fluids and anti biotics and anti nausea and soon enough she would be feeling fine. She would go home and within weeks or days or sometimes hours, we were right back at the ER. And the ER doctors would look at her chart and her situation and she was almost every time admitted.

 

I started putting it together as to what was different between the hospital and home. At the hospital she would get fluids. She can not drink but very small amounts of water. She can eat nothing. They would give her anti biotics and anti nausea. At home she would have prescriptions for the same. Since most of her intestines have been removed, she is unable to absorb oral meds. So we ended up doing my plan which was everyday trips to infusion for fluids and meds. After a few weeks we dropped it back to every other day as she was getting too much fluids and started swelling. Then we had another long stay due to the same virus she keeps getting an infection from. At this point they would not allow me to administer IV anti nausea or IV anti biotics.

 

So she was released and we had liquid pain meds and liquid anti nausea meds. They worked barely and she still needed the fluids. So for a long tome we went to infusion every third day. She would go in and get a tune up, and be fine that night and the next day. She would slowly get worse and by the third day she was really sick again. This was the routine. And I kept begging for home IV drugs that I could administer. Some on a schedule, some as needed.

 

The drugs are controlled substances. They dont like to do that cause this stuff is really powerful. Finally after this last stay and the third social worker working on our case, I finally got some training and now give her the meds at home and no more trips to infusion. This week she is doing better than she has in months. And when she starts getting sick, I have the stuff to relieve the nausea and it actually puts her to sleep. She only has needed it once since we left.

 

Sorry this got so long winded. The morale here is you as a caregiver have to get deeply involved in her care and what the doctors are trying. They call it practicing medicine cause it is a guessing game. When you ask questions, you get their best guess based on what they see today. They have hundreds of patients and so none of them can make decisions based on long term history. They don't have the time to research that deeply. Even the same doctors we have had for years are now taking my suggestions more often than not. I am not smarter then them. Not even close. I am just intimately familiar with my wifes reactions to drugs and her care. Having been there everyday, I have knowledge they don't.

 

Her case is sad, but they are also learning from her as they are from many patients. Cancer is still a big unknown but they are getting much better. 15 years ago, no way she would have gotten 5 extra years let alone 8. If you or your loved one has cancer you can feel free to ask me anything. I will try to refer you to some answers. Her case is much more complicated then I can put in writing. She has had 3 debulking surgeries and multiple "procedures". Very little left of her parts in the abdomen.

 

Debulking is an experimental surgery where they remove a whole bunch of parts of you. Its a tradeoff. You get more time before the cancer take over completely but it is a diminished quality of life. She also had two multiple days chemo sessions. One was 6 months, one was 4 months. Chemo kicks the absolute life out of a person. It takes days to recover and then right back.

[caregiver]

The last time at the hospital, a week or so ago, I could not hold my composure. She was in her room, with the nurses plugging all the toys they had into her and I went out in the hall to just let it out. I was trying to man up and put on a strong face, I couldn't. I was scared, angry, frustrated, all of the above.

 

One of the hospital chaplains found me. We talked. I told him God has to be an alien and an absolute dirtbag. I told the chaplain my plan on my death was to kick St Peter in the nutz and let myself in the gate. And when I found God, I was going to do the same to him. Multiple times.

 

I am not at all afraid of being kicked out and sent to a very warm place. Nothing can be worse than the life we have lived the last 15 months.

The chaplain said he would pray for us. I told him to let God know I was coming for him, and he had some splainin to do.

 

I am fit to be tied most days. I put on a strong face when talking to the doctors or nurses and I am very tuned in so I can answer the questions. I get multiple calls from all of these people following her status. I have to be on top of everything as she is only this week really able to be herself in any way. She is not able to do anything for herself. I am hopeful now that we finally have the proper meds and care at home that she may be able to get on her walker again. Maybe, we will see.

 

I get some help. But her meds are sort of important and since they are going directly into her bloodstream, a lot of care has to be taken. I am not sure about teaching others to do that. It is actually pretty easy to make a mistake and she will be right back in for an infection again. Or worse? The problem with this infection is the doctor told me eventually it will become immune to the drugs, and there are very few new anti biotics being developed.

 

Unfortunately, developing drugs for erectile dysfunction is much more profitable than developing new anti biotics. And we will all pay the price down the road as more and more viruses are becoming immune to the drugs we have.. But that is another issue.

 

The new drug she is getting this week is rather expensive. My copay is going to be a few thousand for this latest round. The financial burden here is a lot, but we saved and invested a large amount of money so we are in good shape. She was always very frugal with money.

 

Now the heavy part.

 

I have read a lot of these forums. And its the same things for many of us. Mismatched sex drives, lack of intimacy, total lack of sex altogether, or feeling like the relationship is only sex and nothing else. Men and women don't seem to know how to communicate their true feelings or needs. Or they are just using each other waiting for something better.

 

We have no sexual intimacy. After her first operation, about 8 years ago, intercourse caused her too much pain. The physical part was not a problem for her. She has always had a low sex drive anyway. We dealt with it as best we could. I said before, it was never enough to throw away a good marriage for. We did the counseling thing. But what save us was our ability to just talk about things. And be brutally honest even when it hurt.

 

I did some research and a little less than half of women have FSAD. Look it up. Difficulty getting or staying aroused. And about 20 percent of men have similar issues and that is not counting ED. It simple, some people are just not that into sex. Some of us are raging horndogs and can't live without it. I fall into the latter category but unfortunately I am now involuntarily celibate. Even though she rarely needed sex, she still understood my needs and took care of me other ways. The last several months she has not had the strength and has almost always been sick.

 

It got to where I felt real guilty worrying about my own needs and I could no longer even mention it. Men need the release. It actually important for our physical and mental health. For me, I know that when I go a long time without, first I get depressed, then I get angry and curse at God. But God is not going to take care of my needs either. And then I get back to depression.

 

When your spouse is throwing up in a bag and she has been leaking and the fluids are burning her skin, the last thing you should be thinking about are your own needs. It is the most helpless feeling. And that is where you really start feeling guilty, disgusted with yourself and very alone. And you are helpless to help her. Thank God they got that under control.

 

Sometimes I feel unappreciated. I feel like she is not aware of how much I am suffering also. I feel resentful being a 24/7 handmaid, nurse, manager, whatever.

 

I have a friend from many years ago I stay in touch with on occasion. She texted me. I texted back and we ended up talking on the phone for awhile. A few times. She knows where I am cause she can read my FB page anytime. I was very tempted. I wanted to visit her. I wanted to escape, even if it was only a moment.

 

Sometimes sex is just an escape for us. Its an intense act and for just that moment, we can forget our troubles. It afterward that reality body slams us and we have to try and live with ourselves for what we have done.

 

It didn't happen. And as frustrated as I am, I am glad cause I already have enough guilt to deal with.

 

For now her strength is very weak. Imagine you had the flu for several weeks and were stuck in bed. That is close to where she is. But this last week has been encouraging. She is alert, able to adjust herself and sit up. I am hoping she gets the strength to get back on her feet a little. The last scans showed no cancer so based on previous experience, I figure she has maybe a year or more before the cancer comes back and takes over. She is not able to have any more surgeries. We are hopeful that she could get strong enough to even go for a ride in the car for a few hours. It would be nice to just take short road trips.

 

We just don't know. The infection thing is always lurking. Its scary thinking about what the future may bring. Our experience so far has been that its just keeps getting worse. For the moment, we are getting a break.

[NTV]

how often do the kids come visit?

[caregiver]

My son lives with us and is a great help. My daughters come by a couple times a week. The youngest mostly visits and the oldest is sort of a mother hen type, fawning over my wife, giving her a sponge bath, doing her hair, putting on lotions etc.

 

Knock on wood my children are really wonderful. Her best friend comes over a few times a week also and does a little housework and spends most of her time entertaining my wife. They grew up together so have a special bond.

 

Her sister has come over on occasion to give me a break. Sometimes just so I can work on some project without having to come inside and clean up constantly. Her mother has also stayed with us for several days at a time just to help out.

 

Her care is not hard, it is just continuous. I am so burnt out on the trips to the hospital. When she is admitted I make two to three trips a day to see her and sometimes spend the night in her room. When she is home its a little easier but still she has constant needs. I can get a few hours a couple times a day where I can work outside or in the garage. I carry my phone so she can call if she needs something. It rings a lot.

[caregiver]

I need to stay up another hour and give her some meds. Today we had a couple nurses come by. One changed the pain medication and pump and the other worked with her doing some stretching of her feet. One of the reasons she cannot walk is her feet point south from lack of walking. Those tendons are extremely tight.

 

I didn't sleep well last night and tried to catch cat naps all day but hard to do with the nurses in and out and the heat. I can't sleep when it gets over 80.

 

Tomorrow her best friend comes over. Maybe I can grab a bit of extra sleep while she is here. I said I tried to hire her. I would teach her how to unplug the TPN which is pretty simple and also administer her shot and meds at 2 pm. That would give me a several hour break. Not much but it would sure help. The problem is she is also taking care of her mom who is in her 80's and I think actually a bit too dependent on her daughter but that is what happens.

 

When we get older, taking care of each other is something none of us expected or planned for. My wife is still doing very well compared to just a week ago. Last night I had to give her some anti nausea drug that is only as needed and it made her feel better and also put her to sleep. But not a good sleep. She moans and almost a crying sound in her sleep. This morning she slept in and then the nurse showed up.

 

She also gets another anti nausea that is every 6 hours. Not so many side effects. It works most of the time. The other one is quick acting but bummer side effects. She has only needed it twice since we left the hospital. Really hope this continues cause too much of that stuff is what makes her totally out of it all the time.

 

We did an inventory of my supplies and I need to do so again tomorrow cause with all the IV stuff she gets I am using a ton of alcohol wipes and flushes. She is getting 80-100 ml a day of just the saline flushes. I was backing off a little bit but she is drinking so little fluids now I worry about her getting dehydrated so back to using the full flush. If I have to start bringing her back to infusion for hydration, being moved might do more harm than good.

 

This is my world. Tired, worn out, worrying about infections, hydration, drug interactions, too much or too little drugs. Nurses, doctors. Trying to keep her comfortable. Never knowing when our next ER visit will be. I need to coordinate simple things like when I can go do the shopping. I have so little time for myself and then feel bad about complaining. I am fully aware that one of these days I will have more time for me than I want. My days will go from overflowing to totally empty.

[caregiver]

She died in her sleep. We took her to the ER as she was breathing heavy and they did tests and xrays and found nothing. Before we left she told her friend who was visiting that she was done.

 

So the ER released her and she died that night. We called 911 and the ambulance and the fire dept and the police all showed up and did their thing. A chaplain came over to try and help. Then the family and friends came over.

It was quite the cryfest. The ER doctor who released her called me and wanted to know how I was doing. I told him I was a mess and couldn't stop crying. I think he wanted to figure out if he would be facing a malpractise suit.

 

I don't blame the hospital. We have spent most of the last 18 months there and did everything possible to extend her life. I think the pain and suffering just finally took its toll and she lost her will. She has been struggling a lot the last month and in and out of the hospital a couple times. I was reducing her pain meds and nausea meds as much as possible as those made her real loopy and confused. The last week, even at low levels she was still confused.

 

Suing the hospital will not bring her back. And not really sure there is a case since she was on borrowed tima anyway. They gave her 5 years, she made it for 8 years.

 

We were married for 38 years. It was a good marriage and we always found solutions to our problems. We communicated like few couples dare to do and nothing was hidden. We had unconditional love and showed our affection daily. She had the freedom to do pretty much do what she wanted and buy whatever she wanted. Trust and loyalty were never a concern.

 

Our marriage was special. Public displays of affection after that many years are rare but we were always that way. She was truly my best friend and confident, my wife, and my partner in life.

 

For the last 8 years we fought the battle together. I took her to all the doctor appts and a few trips across state for experimental stuff. We retired early 4 years ago so we would have more time together and with family and friends. For two years it really was the good life. Spending a lot of time at the coast with a boat and travel trailer. Lots of fishing and sight seeing and I think her favorite times were just the evenings around the campfire with her family and friends.

 

The last 18 months were the most awful and painful, stressful times I could ever imagine. Taking care of her was constant. Getting her to and from the hospital in the last months required an ambulance transport as she could barely move. She suffered greatly. I think that is what ultimately made her give up.

We had 36 years of a really good life together. And a year and a half of sorrow and frustration.

 

She is no longer suffering. No longer in pain and no longer sick all the time. She was the toughest most fearless little lady you could ever meet but nobody can go on with her symptoms for months on end.

 

My own suffering is only just beginning. I truly know what I have lost and there is no fix. I can't stop crying. I am grieving for her and all the things she will miss that she loved. Watching her grand children grow up. She loved the birthday parties and holidays and anything family. It is so unfair that such a beautiful person suffers and dies much too early in life.

 

And I grieve for me. No longer will I feel that special kind of love. The affection out of nowhere for no reason except to say I love you. No more cuddling as we fall asleep. No more conversations about what tomorrows plans are. I have a lot of family and friends but my world has become very much empty.

Edited November 22, 2016 by caregiver

[l8estnews]

I am very sorry to read this, Caregiver. I really have no words to say to comfort you. People have been here like you so find a support group. Post a thread in the "Coping" Section so that you can find emotional support even just online. My thoughts and prayers for you.

[SeenNotHeard]

Caregiver, I am sorry for your deep personal loss. I know right now those words feel hollow. You gave your spouse everything you had to give your time, your love and your unwavering commitment. True love is hard to come by and you had it in spades. Hope that love comforts you in this time.