SPOUSE CAREGIVERS

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KarenS
KarenS's picture
You're right.....

Smedley, you're right about picking your battles.  I'm working my way through the top 10, and will get it done little by little.  I got my health insurance taken care of, which was a biggie..  so I can check that off.  I got the bills changed to paper, and am getting those done with balancing the account.  His social security, and pay checks are still coming in so I haven't had to dip into any invested funds.  Now to call the CPA, and Attorney tomorrow and see if I can straighten out the taxes or get an extension again. 

My days are spent in the hospital.  There's really nothing I can do, but talk to doctors on treatments and be a good advocate in his health care.  I'm watching over him, and am just by his side being supportive.  Hoping my presence is felt. 

I was thinking of you yesterday Smedley, and all the emotions you must be feeling taking care of your wife's final arrangement.  It's so difficult while they're ill, and even more so letting them go.  It's a healing process you'll be in after.  Everyone is different in how they cope through it.  I'm a quiet sort with this, and bask in trying to find some calmness.  Too much commotion (which the step-children brang during their last week visit) just wore me out. 

At first they wanted me to let him go, but honestly in my heart I did NOT feel it was time to give up.  That caused some mixed feelings.  The next day though after the Intensive Care Dr spoke to us about him, they all changed and also felt we should give him this chance to see if he could make it through.  It will be a very long haul if he makes it.  No one knows, and there seems to always be something popping up.  There is no real progress, he's just holding his own so far.  Trying to wean him off the sedations, and drugs...  so he's not delirius.  You'd be amazed how it looks like a drug addict withdrawing with sedations used.  I think everyone should check out this website ICUdelirium.org   You wouldn't believe how common it is, and we all will have been in the hospital sometime or another on sedatives.  They have actual patient videos, and also ones of a doctor viewing 3 patients in the hospital and how each is less coherent. 

One day at a time for all of us.  I try to get through it, and then through the next.  Thinking too far ahead makes me uneasy.   Walt keep getting as much time in as you can with the good days.  The boardwalk must have been very nice.  I hope you, and Smedley stay in touch here.  I feel a closeness with all we've shared with everyone.  Our Arizona sun may be cooling down soon.  I hear it's rain with lower temps Monday and Tuesday.  I may have to get a lovely walk in, and just breathe. 

 

 

 

WaltK
Insurance

Karen,  I am so glad that you got the insurance problem taken care of.  That would have been my biggest fear where the paperwork was concerned. I'm sure the CPA and the Attorney can guide you with those problems.

The drug withdraw is something you don't usually consider. When my wife stopped taking pain medication for a rod put in her hip because of the bone cancer, it took almost a month and she was taking small doses. I know it taught a lesson.

I hope you can get that walk in. I plan on taking a short trip in my boat this week to relax.

 

 

KarenS
KarenS's picture
Thanks....

Thanks Walt.  Yes, the insurance was a biggie.  Wish I could have gotten the same company with PPO, but HMO seems to be the way these health insurance companies are all heading.  I'll stay with PPO as long as I can find a company who offers it in AZ. 

I'll try calling the CPA today, to see if it's possible to get another extension.  6 more months should give time to see how my husband is, and then I can just get it all done.  Either way I'll get it taken care of.

My husband's test still show he has C. Diff.  They cut his Fentynol pain med down, and took him off of the Precedex sedation.  If he gets anxious they give him a hit of something but try not to run him on a drip.  He appears to look at you, and understand but we can't get him to respond to a command of sticking his tongue out or anything yet.  They are going to run the regular dialysis, and see if he can tolerate it.  Besides that, he's just holding his own...  no improvements. 

Glad to hear you're going to get out on your boat.  I might be up for that walk tomorrow if the weather is cooler.  This afternoon is my call day. 

I hope Smedley is hanging in there.  He has a lot going on with his wife's passing away.  We're all on this emotional roller-coaster, and I must say I'm ready to get off.  Taking it day by day.  ; )

 

 

WaltK
Karen

Karen, your writing sounds a little more relaxed. Maybe that is because of getting the insurance problem taken care and maybe it is a change in the meds. Probably a combination of the two. I hope you are eating and sleeping a little better. The walk will do wonders for you.

KarenS
KarenS's picture
I'm leaving the hospital early.....

I'm leaving the hospital early today, around 1pm so I can get some rest.  I just feel so worn out from the long days.  It's get up at 5am every day, so I can make it there at 7am for all the doctors to make their rounds.  It's mentally exhausting too.  Almost 6 weeks now of 10-12 hour days with no break.  Fact is, I don't feel good when I'm not at the hospital...  my mind pulls me back there.  I'm in need of a good afternoon nap, and I know I'm pushing the envelope if I don't give in. 

Yes Walt, getting the insurance was a relief.  I am eating healthy, and trying to get sleep.  Talking to the CPA, and getting all the tax papers I can find to them tomorrow will be another task done.  I've also called the attorney to get my alternate health POA changed.  It's hard to know the right person to put on.  You think you've made a good choice based on different factors, but seeing what really happens when you go through something like this changes your mindset.  People handle things differently when under a stressful situation, even with medical behind them.  My sister has been the best advocate, and researcher through this...  more so then his nurse practitioner daughter.  So things are getting done, and I'm feeling better about that.

It's stressful no matter what, but not having control or knowledge of household things just adds to it.  Everyone should be able to step in if a spouse falls ill.  It's a dis-service to the healthy one if they're blind, or don't have the knowledge given to them to do so.  It's honestly more than enough to have to deal with the illness, let alone trying to figure everything else out.

That walk may be in order today before my nap.  It's a cooler 87° here, so I'll have to take my dog for a well need walk in the park.  We both need it.   Walt I hope you too are taking care of yourself.  It's not easy to do so when you're all wrapped up in your spouse's care.  You have to keep pulling yourself back, and realizing how important keeping your health up is.  I'll be calling my doctor today to make an appointment.  Smedley, I know you're on an emotional roller coaster with all you have going on after your wife's passing.  I hope you are getting some rest, and not over-doing. 

I hope everyone has better days.

Smedley_Butler
Another Check-In

Hi Gang,

Things sound a little calmer for folks at the moment.  In my case, the main funeral is over and I've been back home for several days.  I'm still taking care of legal and financial issues and trying to find my way in my new normal, but things are slowy but surely getting better.  My wife is, of course, on my mind constantly but it is becoming easier to work through and I've always had the mixed blessing of being able to compartmentalize very well so when I have something that needs done, I can usually focus on that and set feelings and emotion aside.  I was out of my element for a while when I could not do that as easily, but it is coming back and it makes the days easier to get through.  It's the nights and mornings that are the worst.  When there is nothing that needs done and the house is quiet and the emptiness closes in.

Karen, I'm sorry to hear of the downward spiral.  I wish I had some words to offer you to make it better other than it sounds like you are doing the right things.  To be honest, I would not worry so much about the grown step-kids.  I have some also.  I comfort them, but I also won't coddle them.  They have spouses and others they can turn to for support.  I have enough on my plate without babysitting them.  Just my take on it.  I'm also happy to hear about the insurance and that you are trying to get some rest and take care of yourself.  You've been here before so you know how important that is.  Have you and your dog con for those walks?

So how are you doing, Walt?  Your last couple fo posts sound more upbeat.  I hope that means you have found your rhythm and are getting some rest and "you" time.  

Well, I gotta get signed on to work.  I hope everyone has a blessed day.

SB

KarenS
KarenS's picture
Hi Smedley...

Hi Smedley,

I'm so glad you're getting back into the swing of things.  Paperwork and attorney's can be trying, but you too sound like you're getting things done.  I understand how you feel about the mornings and nights.  It's very quiet by me too.  Not that there's much time, it feels like it goes by so fast and before you know it's time to get up again.  With my fiancé's death I went right back to work, nd threw myself into so I could turn off my brain for awhile.  Keeping does seem to help, it's those quiet moments with no one to talk to which get one down.

Yesterday was a nightmare.  The Intensivist said the Brain MRI was clear, but that he wasn't in there...  plus that because they couldn't do a contrast it didn't show all it could.  His Oncologist said he's not even tracking with his eyes, plus that without the chemo the cancer would probably get him in 3 months.  A kick to the gut.

Then yesterday night the nurse started to move his arms and legs.  After he opened his eyes, and seemed to hear what I was saying.  I said give me a kiss.  He puckered up for one, not once but 3 times on request.  The physical therapist came in, started doing arm and leg excerises to get them moving nd she said it seemed he was trying to put resistance when asked.

Today they did physical therapy exercises (moving his arms and legs), and he was wiggling his toes on request, and trying to squeeze her hand.  He also tried saying good morning to her, and answered no to a question.  It's hard because of the tract, but we all heard him.  He also is using his eyes to squint for yes.  So the man is in there. 

The Intensivist today said the Brain MRI was clear, so that means he did not have a stroke.  He also said he is in there, and is responding to commands.  He's going to get a infection doctor to take a look at him.  They did cultures the other day, and so far we're getting negatives but some can take 48 hours or more.

He's like a weak kitten laying there for 6 weeks with no movement, and fell asleep after all the moving about.  This was a good day, but I'm realistic and know him being alert isn't taking all his other multiple helth problems away.  My sister flys in tonight, and will be staying for a week.  She's done research on it all, and has mny good questions.  She will be a good advocate, and give support. 

My Mom will be coming back to the states mid October, so it will be good to see her too.  They'll be tking him shortly to put  line in for dialysis.  I'll head home to let the dog out, and see if I can lay-down for a little.  I have not been getting sound sleep, and had been eating healthy...  but yesterday threw me for a loop, and I did all just to get some cheese and crackers down me.  Emotional roller coaster. 

 

WaltK
HI guys

Hi Karen and Smedley.

Smedley, I'm glad you are home safely and are starting to adjust to what will be "normal" for now. It is good that you are getting a handle on the legal and financial side of things. Neither my wife or I have a "current" will but we would respect the wishes of the other. We are going to be doing that soon along with a living will.

Karen the movements and awareness have to bring some joy to your heart. It is great that there was no stroke, that is one less hurdle to go over in this situation. I hope your sister can pose some questions that will trigger the doctors to make all the right decisions along the way.

My prayers go out to both of you and hope you both can find a way lessen the stress as you go along.

My wife starts cardiac rehab on Tuesday. This is about two weeks ahead of the initial schedule. She is doing much better and getting around the house easier with less help. Right now she is not getting the chemo injections for the bone cancer. This is so the breast bone can grow back to normal at a faster rate. The chemo was stopped last year when she had a rod put in her hip because of the bone cancer. Hopefully the cancer won't spead any more. It is currently in her left shoulder, left hip and a small amount in the pelvis. She will be getting her blood tests by the Oncologist in about 2 weeks and we will discuss putting her back on the chemo injections. So my roll is getting lighter as she continues to progress with the things she can do.

Be safe.....Walt

 

 

 

 

AliceR
Hi everyone

Hi everyone,

My heart goes out to you all.Having read the posts, you are all going through so much,and still reach out to each other. Smedly, I'm sorry for the loss of your wife. Karen, you have so much heart. Walt,you are a trooper.

My husband, the love of my life,has lung and brain cancer stage IV. He has gone through radiation and chemo in this passed year and months,since April 2014. Now he has memory loss,extreme weight loss,and has been having mini strokes.

Having found this site I don't feel so alone in this journey

                                     Alice.

KarenS
KarenS's picture
Welcome Alice...

Welcome Alice.  Sorry you, and your husband are going through so much.  Hard to see your love go through it.  It's not easy, but it's good to get your feelings out here and get some support.  Do you have some family or friend support through this?  It's so important to try and take care of yourself.  Hard when you have so many emotions going on.  We seem to all be going on this emotional roller coaster. 

AliceR
Thank you

Karen, thank you for the welcome. I'm so happy to hear that your husband is responding to things, and you have your sister by your side.

Yes, I do have support, though I have only recently reached out for it. My sister who has gone through the same with her husband who had cancer, and has passed away. I hesitated on leaning on her and dropping all my emotions on her. Being the older sister that she is,told me that she was here for us, whenever I needed her. I explained that I didn't want her to have to relive the pain.She gave me a big hug then slapped me on the arm and said, she was in the place now where she could reach out without the pain,so get over that type of thinking. Though I still hestitate running to her for everything but I'm learning.

Our son, is indeed his daddy's son, he's here often and helps his dad. We've talked and he said that he felt so helpless,not being able to "fix it" I told him,I know the feeling.Being the mom,I told him to make sure he had support. He does,from his brother in laws who lost their dad to cancer,the day my husband was diagnosed.Our son,worries about his sister and how she is coping.Our daughter has Down's Syndrome.As our son is, his Dad's sidekick,our daughter is Daddy's girl,and lives here at home so she sees the changes. We have a couple of family friends who come by and hang out with our daughter and take her out to do the "girl thing" as she calls it. I know she misses our girltime together, when we use to go out,but I'm working on it. The last couple of weeks have been tough because of my husband's sudden hospital visits,followups, and his sudden downhill slide. The last couple of days,he has been somewhat coherent at times but his nights are now his days, and here I sit, looking for a site where I can find my outlet and support.Our family friends have offered to come and hang out with me like we use to, and I think we will.My husbands friends' want to come and see us and the four of us go out to lunch or dinner, which I have accepted. I don't know how Scott will be but it's worth a try. I know I need to reach out more,but I've had to distance myself from a couple of friends because they were doing more harm than good to me emotionally.But I am taking a step forward. It all starts with one.

                                      Alice

 

KarenS
KarenS's picture
Hi back at ya...

Hi back at ya.  Walt I'm so happy to hear your wife will be doing rehab soon.  Smedley I hope you have some company for the quiet times.  Sometimes even if it's a body there with no words...  it's comforting.  It's a tough road, but better days are coming.  It's sure hard to believe it, but they will.

I picked my sister up last night, and I am so glad to have her for a week.  She's of great comfort to me, and so much help in being an advocate to my husband.  She's brought up some good questions for the doctors and treatment.

He's been on CPAP mode through the trach for 10 hours now, and still counting.  That's good.  They've been giving him physical therapy daily now.  He stuck out his tongue when they asked him to, and is moving more.  He tries to talk...  mouth the words.  He tried pulling his body up with shoulders and arms.  No sedatives, more movement and alertness.  We are having them cut his Oxycodone in half from 10 to 5, and Valium only as needed in am.  So he's more alert during the days, but rested and comfortable at night.

The cultures are clear.  The Infectious Disease Dr took only has him on oral antiobiotics through the PEG, so hopefully the C. Diff clears over the next few weeks.  Tomorrow they're going to put a new trach in, since this one has a little leak.  The Neuro Dr said he doesn't see any issues...  some more good. 

So he is in there.  All, and all it's been a good day.  He still has many health issues...  kidney dislysis, trach, C. Diff.  Not to mention weakness from laying for 6 weeks.  The battles not over and he may not recover, but I am not giving up on him.

 

WaltK
Welcome

Welcome Alice, having read the posts I'm sure that you see that we encourage the care giver to also take care of themselves. It is important to be as mentally and physiclly able for your partner. I am sorry for your situation. My wife cooked dinner tonight. It was the first time in a long time she felt strong enough to do that. I wish you and your husband well.

WaltK

 

AliceR
Thank you.

Walt,thank you for the welcome. I'm so happy to hear that your wife has been up and doing things. I'm so glad that she was strong enough to able to make dinner. Iknow you are so happy to see that.

I read somewhere that if a plane's oxygen mask comes down, a person should put it to their face first,otherwise they won't be able to help others.I think since that went against the grain for me, putting myself first,I never quite got the rest of that. Well, the lightbulb went on recently and led me here. I took a good look at myself the other night and my jaw just dropped, I'm 60 years old but always felt and acted younger, what I saw in the mirror shocked me. I realized what I saw, was what others saw and it's not pretty, and here I thought I was doing well, even though others kept telling to take care of myself,I would ask them how did they expect me to do that when I was trying to concentrate on keeping my feet on the ground.I fell fast and hard this time.I'm surprised because I've always relied on God's strength to get me through, but I  forgot that He puts people in our lives when we need it,and we need to reach out.I met my husband when I needed someone to help me.When our daughter was born with Down Syndrome,her pediatrian told us to put her in an institution and go on with our lives. My husband got angry and said, we're leaving and not coming back here. I'm glad before that we had seen a counselor that told us that she was our daughter first, treat her as you would if she didn't have Down Syndrome.When I was diagnosed with breast cancer,my husband stood by my side and told me how beautiful I was.Through all the things that have happened over the years, I've stayed strong. When my husband had an angina attack,I stayed strong,now when he was diagnosed with cancer I stayed strong,or so I thought. Because I thought we were seeing the light at the end of the tunnel when his tests came back clear,though he is stage IV I thought we still had more time for my husband's dream of retiring,moving to Idaho and fishing and living his days out there. Boy,was I wrong,but then my husbands primary said I wasn't seeing reality and to take him home and make him comfortable.My husband's onocologist said differently, he said he could have 6 months or more time, with radiation and chemo and he did. This was back in April 2014. Now I go day by day, waiting to see what happens next, but not handling it well,like I thought I would. Especially when he has the mood swings and he gets angry and shouts,which isn't often only when I get after him to eat, which I do constantly..I was so surprised when that first happened,He was normally a calm person.He was the reasonable one, I was the emotional one. He was the voice of reason.Then I came here and saw it was fairly common, and it wasn't anything that I did or didn't do.Now trying to explain it to our daughter is tough but she understands that he is sick and always tells him to get better. She understands that he has cancer and he's sick, and is afraid he will pass away, so when she talks about it, we let her and pray we give the right answers. Geez, I am long winded tonight. I normally don't do alot of talking, I'm usually the listener. I guess it's another thing that is changing. Thanks for letting me get it all out.I do feel better.

I hope I can be of some help to all of you when you are in need.

                                    Alice 

AliceR
I'm back

Hi all, It seems like today is one of those days when I can't shut my mind off.My husband and I were sitting watching TV and he turns to me and asks me if we have nails to fix the car.He was a mechanic when we first got married and I know that you don't fix a car with nails. I look at him and think I need to protect him,keep him safe and be his rock,as he was mine. I want to tell him, come back to me,I miss you. I did do this when it first started happening.A few days ago,he looked at me and said he missed me,He's eyes filled when he looked at me and said,I don't remember. It broke my heart. It broke my heart  when he was in the hospital and didn't remember me. We met when we were 11 years old, we became best friends when he rescued me from a boy trying to hit me and twisting my arm, he became my knight in shining armor. we stayed best friends all through school, we starting dating after high school and we have been married for 40 years, (and they said it wouldn't last)  we have known each other going on 50 years next month.I'm not saying our marriage is perfect. We had our ups and downs, alot of it I caused.because I was so immature, and he was so responsible,I felt the urge to rattle him.

I miss who he was just a few short weeks ago. I miss talking about the little things and the big things with him.I've gotten frustrated when I can't lift him and I ask him to help and he just turns and grins at me. It annoyed me before, now I just laugh. You have to laugh or you cry.Sometimes he helps sometimes he doesn't, so I need help lifting him which is good in a way because that means he has gained some weight, I've been looking into having someone to come in and help with lifting him,and going with us to Dr. appointments, sometimes he refuses to get out of the car, he tells me he doesnt want me helping him,he will wait for our son.(Our son has returned to work after being laid off for a few months from lack of work) My husband sometimes talks about himself as if he was talking about someone else. Then there are times like now when his eyes are clear,his voice is strong and he asks if I've made coffee. The roller coaster ride is tough to be on.

I know in the light of day, things won't look so bleak and I will carry on, and not dwell on the bad stuff.I will take care of the bills, make my phone calls for his Dr.appts.this week,Do what I need to do,get things done that need to be done. I will spend time with my family and enjoy them and lean on God for strength for all the hard things.

                                      Alice.

WaltK
Cardiac rehab

My wife started cardiac rehab yesterday. It was an orientation and some walking to get a base line so they can work with her. It is a very nice facility less than a year old and not too far from home. So things are good here.

You all are in my prayers.

Alice it is true about the oxygen masks on the plane.....you can't help if you can't function.

Walt

 

AliceR
Cardiac rehab

Hi Walt,

I'm glad to hear that your wife started rehab. Have they figured out the baseline yet and how often she will come in?

Keeping you all in my prayers.

                    Alice

AliceR
Something in the air?

Hi, A few weeks ago,my husband's brother called him and told him,that he was going in for testing for cancer, that's when my husband told him about his. (they hadn't spoken in a while) well, results are in and yes,he has cancer. I spoke to him a couple of days ago and he told me that he would be starting his first round of chemo. He wants to come up and say goodbye to his brother.I told him it wasn't going to be a goodbye, it would be a hello,because they need each other at this time. We talked for a couple of hours and I told him if he was going to go then go down kicking and screaming,but fight. I told him each day is not guarenteed but you live it fully and don't give up.Do what he thought was best but keep a positive attitude. I told him,I could say this because I went through it too.yes,mine can come back but if it does I will continue fighting until God signs the paperwork. He was surprised that I was handling my husband's illness so well.I told him that I hadn't been.I had gotten depressed and hadn't been taking care of myself, but now I have my fiesty back.He laughed and said he couldn't imagine me losing that.:) He remembers how onery I use to be. :)

On a lighter note,my love and I went out to dinner with his best friend and fishing buddy. My husband didn't talk much but I could see he was having a good time with his friend.He even ate more than usual,I was so happy to see that. we are planning to get out more and spend more time with my husband's buddy and his wife. Maybe even do some day trips.

                                      Alice

WaltK
Siblings

Alice, I'm sorry to hear that your brother-in-law also has cancer. It is known to run in families. My wife is the second of four chilren, all four are battling or have battled cancer. Her younger brother and sister have already passed away. Her older sister is definitely in a more dire situation.

I'm glad to hear that you had dinner with the fishing buddy. I know my wife always brightens up when someone else is around. I didn't do much fishing this year and it looks like I will have to pull the boat out of the water because of huricane Joaquin coming to the East coast.

My wife will do three weeks of twice a week that is one on one and ten do up to six weeks three times a week with a small group. She wares a heart monitor and was on five different machines for two minutes each and in between each machine she does two laps around the workout area. She allowed to rest if needed. She did very well today. I'm very proud of her.

Karen and Smedley I hope you are doing ok. You are in my prayers.

Walt

 

AliceR
Siblings

Hi Walt,

Yes,it does seem to run in families. My mother in law and father in law passed away from cancer,ten years ago, six months apart.

I'm sorry to hear that your sister in law is in a dire situation.

I'm happy to hear that you wife did so well today.I can imagine you have a huge smile on your face.:) I will praying for her continued progress.

I had heard there was a hurricane headed for the East Coast. Were you ever able to take your boat out? I remember in one of the posts you had mentioned to Karen you were thinking of taking it out. My husband had talked about buying a boat when we were planning to move to Idaho. He wanted to park? moor? it at the lake there.: )

I'm praying that the hurricane doesn't do much damage for you all on the East Coast. I will be praying for you all. We're on the West Coast.

Karen and Smedley you are also in my prayers.

                            Alice

WaltK
Hurricanes

So far the hurricane seems to be heading west of us and won't make land fall. So I haven't pulled the boat out of the water yet. I am keeping an eye on it and will pull it if necessary.

We went to the Oncologist today and he wanted another PET scan so he can see how my wife (Leslie) is doing. If everything looks good he will start her on one of the two chemo drugs she stopped taking because they hinder bone growth. Leslie drove for the first time in a looong time. It was a ten minute trip but it restores her confidence.

I hope everyone is doing as well as can be expected.

Walt

AliceR
Hurricanes

Hi Walt. I'm glad to hear that the hurricane won't make land fall.

I'm so happy to hear that Leslie drove today. I'm sure she was one happy lady:) Let us know how the PET scan comes out. Praying that it comes out the way you need it to.

Doing as well as can be expected here,trying to stay positive,and finally taking care of myself. That was a hugh undertaking. :)

                            Alice

 

 

 

 

AliceR
Night time

It seems that the night time is the worse time for me.It's quiet and the thoughts come and reality sets in. I was told by one my husband's Drs'that I wasn't seeing reality and I was in denile. Well,growing up the way I did,I know what reality is, so,I told him,I'd never been to Egypt so I've never seen De Nile. :) He said it wasn't funny,I told him it was. Hey,if you don't laugh, you cry. I've always been a realist but I've always had Hope.Hope is what I hang onto.God's grace and His strength is what I lean on. This is a tough road to travel and my prayers are with everyone who travels this same road.

I'm a little ragged around the edges tonight but I know tomorrow in the light of day, I will be strong again.

                                  Alice

 

WaltK
Night time

Alice, I know what you mean about the night time. I am the same way. My mind is going over a thousand things. They range from good and bad things and from present to past things. I am not a big reader in the sense of reading books. I read mostly technical stuff. There have been nights that I try to read something boring just to put myself to sleep. I have found out lately (this works for me) I go onto you tube and find something that I am interested in but is boring. Whether it is the technical side of photography with F stops and shutter speeds or the in and outs of rebuilding an outboard motor for one of my boats. I either learn something or it puts me to sleep without my mind thinking of everything that is going on at the present or how I should do this or that. It is one of those things that seem to work for me. It puts my mind on one subject and I can focus on that. If I am having a bad night at the bowling alley, I use self hypnosis to focus on my game. It just points my mind in one direction. Wow, I didn't think I would say that much about that subject, but it just seemed to come out of me. Thanks for listening and thanks for opening me up.

Karen and Smedley my prayers are with you.

Walt

AliceR
Night Time

Hi Walt,I'm doing a bit better today. I spoke with my brother in law and my sister in law tonight,it felt like old homeweek.We hadn't spoken in years,no ill feelings between us,we just let life take us for a ride., and took it for granted that we would get together some time. Seems some time is here. They plan on coming up soon,since brother in law has already started chemo,they are waiting for the ok from his Dr.

I hadn't realized that youtube had so many things to see.:) I never really looked around. I'd only go in looking for a specific thing. I went in last night/this morning and ended up watching a two hour movie. I like your idea to look for something boring,hope it works for me.:) I will give it a try. These all nighters just aren't making it for me.Last night was a bad night for me,sad, tired, and thinking, plus just being plain tired of wearing the "face" I put out to people during the day, wore me out. I was trying not to be a bummer last night but if it helped you open up,then I'm glad I came in and dumped. :)

You also gave me food for thought.I"ve realized that I haven't gotten back to doing the things I like. I think it is because my husband can't do them with me anymore,our lives are so entwined, and I don't want to do them without him. I was told that I have to start a new "normal".Well, geez,I have started a new normal, it's different from what it was before.Something for me to think on. 

                                       Alice

Smedley_Butler
HI

Hi gang.  Just checking in.  So I see there is some good news and some not-so-good news going on here.  Congrats on one and my thoughts and prayers on the other.  Well, thoughts and prayers to all, really.    Things here are OK.  Still working on the legal and financial stuff and trying to build a new life.  Some days, when I'm at work or elsewhere and get real busy I almost forget she's gone.  Then something happens, I have a bit of meltdown, then the cycle repeats.  All except night time and the early morning when there is no work and all is quiet.  Our house is not that big but it gets awfully big and empty at those times.  

So how's things, Karen?  I've thought about you often lately.  Wish I could offer more to help.

AliceR
Hi

Hi Smedley, I was wondering how you were doing. As you know I'm new here,but my thoughts and prayers are with you. I hope you get through your legal and financial stuff with no problems. I'm sorry for your meltdowns. One step forward at a time,One day at a time. 

                                       Alice

AliceR
And here I sit, again

And here I sit, having a pity party and not much liking it.

My computer has been having fits today,turning off and my restarting it, over and over again. I've realized I'm spending alot of time on it,so maybe it's rebelling. :)

Tonight I'm just going to ramble a bit. I know I'm depressed but tonight I want to talk about normal things,(for lack of a better way of putting it). 

I was thinking of things that I like to do. I love taking photos, and I love to write,so maybe becoming a photo journalist is in my future. :) Scrapbooking with my daughter,we haven't done that in a while, something we need to get back to. What can I say,I think it's a girl thing.:) Been listening to the Oldies, haven't done that in a while. Maybe I should sit down and make a list of things that I haven't done and would enjoy doing again.I'm an avid reader,light reading for now,but can't really concentrate on even that right now. Gardening,hmm, haven't done that in a long time and our yard shows it. I've always found that restful. I know I haven't been doing any of these things because I'd feel guilty about enjoying myself while my love can't. Doesn't make sense but there it is.

So here I sit, trying to figure out how to take care of me and enjoy life again,without feeling guilty. I haven't been to church in a long time even before this and I miss it. Alot to think about, and alot to do. Thanks for letting me ramble, it helped.

                                                            Alice

 

WaltK
Hi Again

It's been a couple of busy days. Along with the normal stuff (cooking, cleaning, shopping and feeding the cats) Leslie is going to cardiac rehab a couple times a week, had an appointment with the Oncologist, has a PET scan lined up for friday, we have been helping her sister whose husband is in the hospital for a bypass operation. The operation is over and everything is fine. They didn't open his chest like they did 25 years ago when he had a quaduple bypass done. He is doing very well and should be discharged by the weekend. The time consuming part for Leslie and Me is taking her sister to the hospital to see her husband. Monday and today we provided transportation and it was nice to be able to help. Monday from the time we left the house until the time we got back home was a little over 8 hours. Today it was only about 6 hours. Today I took a wheel chair with me so I didn't have to look for one at the hospital. It worked a lot better that way. They have a son and daughter in law that have been extreemly helpful. The other kids, not so much. They think a visit to the hospital is all they need to do, but they aren't helping with their mother. So these things have been keeping busy. Leslie and I are retired so we don't have the problem of taking time off from work. That is a major plus.

Smedley, The reason you have those meltdowns is because of all the love you have for her. I hope you take some comfort in that thought.

Karen, we all hope you are doing ok and our prayers are with you.

Alice, It is always good to ramble at times like this. Sometimes talking about the photography and writing or the gardening and scrap booking takes your mind someplace else for a little while. Listening to music almost always has a way of calming you down or lifting you up. I just change the style of music to either compliment my mood or to change my mood. I have a wooden boat that I am restoring. I haven't worked on it for a while. But I think I'll just start small again and try to put some time in on that project. The sanding and varnishing are really calming and to see the wood come back to life with each coat of varnish is amazing. It's like spring time when the trees are starting to bloom.

Well I've rambled a bit tonight, so good night for now.

Walt

 

 

 

AliceR
Hi Again

Walt You've had some busy days. I'm glad Leslie has her cardic rehab going.

I'm glad you both were able to help your sister in law and brother in law with support,and transportation for your sister in law and that your brother in law is doing well.

Our son came by today to spend time with his Dad and sister. They both had the biggest smiles on their faces when they saw him. While he was here, I ran out and did errands, when I came home,I found him cleaning my kitchen and doing the dishes. Our son is just like his Dad, no one has to ask for his help, he just does it. :) While Scott took a nap,our son told me that he would continue to come by during the week. He said he noticed that his Dad ate more when he was here, and seemed more alert. Scott was able to stay awake during our son's visit. The Dr. had mentioned that Scott could be getting depressed, so I'm going to start taking Scott out for short rides,go out for lunch or dinner. Maybe the 3 of us will go out to the street food fair. We've talked about a family outing, the four of us when it gets a little cooler, it's been in the high 90's to 100 here. We will probably end up at the bass and pro shop. :) Or the Fall festival,or both, just different days.

I think, I've rambled enough for now. :)

Karen,Smedley, Walt and Leslie, you are all in my thoughts and prayers.

                                  Alice

WaltK
Friends and family

Alice, that is great about Scott. I have noticed when friends or family stop in Leslie was always more alert or attentive and would have a better appetite. It looks like Scott reacts the same way. There are always certain people who stimulate the person more than most. It seems as though your son is one of those people. It is good that you son noticed the difference in the way Scott ate and reacted. It is also great to have a child like him who pitches in even unasked. he must realize what you are going through and is doing his part to ease the burden.

Getting out to a Fall Festival or something like that is always a nice change. Yesterday, I went to an Art/car show by myself because Leslie didn't think she was up for all the walking. I brought her back a bag of Kettle Corn and the smile on her face was worth a fortune. It is amazing how some little things that you do bring the biggest joy. We might try a 2 hour train trip this week to see the changing colors of the leaves. So enjoy yourself, your husband and your kids.

Walt

AliceR
Friends and family

Walt,that would be a wonderful outing, taking a train ride with Leslie.We've never seeing the changing colors of the leaves that must be so beautiful.

I hope you enjoyed your outing at the art/car show. It is something to see when our loved ones are so overjoyed at the simple things we give them. Scott told me last night that he appreciated everything I was doing. I wasn't sure if he was talking to me or he thought he was talking to someone else.I took it at face value and told him that I loved him,he had the biggest smile on his face.

Today I went for a short walk, and bought myself a cinnamon roll. Something I hadn't done in a long time. I guess it is one step at a time.

                                  Alice

AliceR
Just rambling

We are slowly getting our nights and days back to normal. For the longest time we turned into night owls.

The visiting nurse came by on Friday and suggested that I get my husband a hospital bed,I'm not sure about that. We were in the middle of moving, alot of boxes packed but that's on hold for now. I found out that I need to get the car fixed,and other things seem to pop up that I need to do.I really, really miss discussing things with my love.

                 Alice

WaltK
Results

Hi....We went to the Oncologists today and looked at the results of the PET scan. There showed a tiny bit of activity in the pelvis. The Oncologist was okay with that and wants to restart Leslie on one of the drugs he suspended because of the heart operation. This should take care of any futher invasion of the bone cancer. He is dropping the dosage by 25mg because it was causing a low white cell count. So we will see how this works out. Her monthly injection is the only cancer drug she is not getting. That would retard the regrowth of the breast bone. So we are happy with the results.

Alice, that cinnamon roll sounds really good. The hospital bed could be a good solution if Scott can't get comfortable in a regular bed. I was ready to get one after Leslie's first night at home, but she found ways to be more relaxed and comfortable before her second night at home. It sounds very taxing by being in the middle of a move and then having to put that on hold. Good luck with the car and itsrepairs.

Everyone is still in my prayers.

Walt

 

AliceR
Results

Walt, I'm glad to hear that the Dr.is moving forward,and will be restarting Leslie on her drug that will help her.

I will look into the hospital bed, thank you for your feedback.I wasn't sure about it.It's one of those things, you know,emotions come into play here, with every decision.

                                        Alice

WaltK
No doctor visits

Today we had no doctor visits and no cardiac rehab. Yesterday was different two different doctors and to the drug store for flu shots. Something else off the list.

Hope everyone is doing okay.

Walt

AliceR
AliceR

Hi Walt.Hope you and Leslie were able to enjoy your day today.I know how rare it is, to have no Dr.appts. Hope you both had a great day of relaxing.

                    Alice

AliceR
Friends?

Why is it that friends' give their opinions when you don't ask for them, and make suggestions that they know better than to suggest because they think it would be the best thing for us.What they think is best is not neccesarily best for us. Especially friends we've known for years who should know better, when all this started with Scott, they knew that Scott would be cared for by me and if/when I needed outside help, I would get it. We have a visting nurse, an OT, a PT, and appts with his oncologist and primary Dr., and looking for a helper.I always said, for me, it was harder on my heart,than it was physically, and it is. I know they mean well,but... the road is paved with good intentions. I would rather these friends be part of the solution not the problem.

Sorry, had to vent, it's just so depressing  and annoying to have this come up from people who I thought, were on the same page as us. Everyone has to do what they think is best for themselves. Thanks for letting me vent,I feel better now.

                                     Alice

WaltK
Friends

Friends give their opion because they care. Most of the time it isn't handled very well and it sounds like they are right and you are wrong. Well, what is right for one person or situation is not always right in every situation. It would be nice if the friends would perhaps come accross with a suggestion and word it as another option that you might not thought about instead of coming accross as I'm right your wrong. Perhaps if they offered to take Scott to the doctors or did something else for you, there would see the situation and understand why you do things the ways you do. Most people don't realize that it can be hurtful to give their opions. Alice, please try to take what they say as if it was coming directly from the heart. Of course sometimes people just make stupid suggestions.

Walt

 

AliceR
Friends

Thank you,Walt. I will look at it as if it came directly from the heart.I reread my post and I sounded so angry.It wasn't anger but immense sadness,disappointment and frustration that came out of me.

One friend told me  "You have to put Scott into a convalescent hospital so that you could go on with your life and get things done that you need to get done, you don't need to just dump him there you can visit him all the time" Needless to say I dumped her, after I told her how hurtful that was to hear that coming from her.  I told her I thought friends were suppose to help not hurt. The other friend said that he was of the opinion that I should put Scott into a Rehab Facility, and I asked,as in him staying there? He said yes,I said no. We have people coming in to help him,with PT and OT. He said he wouldn't talkof it again.These two people have seen Scott maybe three times in the last year and a half, and call occasionally. Maybe it just hits too close to home for them.

We are dealing with Scott having depression and trying to get him to eat more now that chemo is over. On a lighter note,He has smiled,he has laughed and has gotten his appetite back. He recognizes people, he is slowly coming back from the ministrokes he's had. Our biggest worry was his broken spirit,and God will take care of that.

We looked into getting a hospital bed but it won't fit into the house. The house was built in the 1940's,smaller doorways and short hallway, so until we move, that is on hold. I'm thinking maybe an air mattress might help him be more comfortable.I guess it's worth a try

                          Alice.

kathiCares
Newbie

You are all so helpful.  This site is a huge relief to me.  I'm at work so I don't have much time to talk now but I will!  My husband has been suffering from chronic kidney failure (and many of its side effects) and COPD for 15 years now.  He's a saint.  I never think of myself as a caregiver because he tries so hard to take care of himself.  But, when I read these posts, I realize that I am absolutely a caregiver and I suffer from (and rejoice in) the same things as many of you do.

His illness began with drama as they so often do.  He nearly died but after a week in intensive care and several more in the hospital, he began to recover a little.  He hasn't been able to work since then.  Our daughter was in kindergarten when this happened (we became parents at age 40).

After the first year, we realized that we would never find out what brought this on and it would only get worse.  Dennis (hubby) went through a severe depression the first year and that made things SO difficult.  His nephrologist explained that the kidneys actually affect your mood and that most kidney patients are on anti-depressants.  After a year of suffering and threats from me, he started taking them.  I got my best friend back!  Since then he's been quite ill but his personaility is "normal".  That is everything to me.

I'd like to write about my frustrations later and just introduce myself for now.  Again, you guys are the bomb.

AliceR
Newbie

Welcome Kathi, I second what Walt says. :) I'm glad you got your best friend back. I'm glad you found us,too. Keep coming back,share the good times, the not so good times,you'll always an ear here.

                                    Alice

WaltK
Newbie

Hi Kathi,

I'll keep this short and say that I am so glad that you got your old friend back. That is very important in the whole scheme of things. There is always an ear here to listen whether it is about the journey you have been on since this happened or if you want to vent your frustrations. Most of us have been through many things first with parents and now with spouses. We hope that we can help. My prayers are with you.

Walt

kathiCares
How can I decide?

Thanks, Walt, for the welcome.  It means a lot.

For a couple of years now, I've been agonizing over when to retire.  I'm 61 now so the earliest possible date for my retirement is only 6 months away. I have a good job that I like.  I also have a husband that I love and I don't know how much longer he'll be around.  I want to retire early so that we have the most possible time together.  He's not going to get any better. (Neither am I, come to that).  On the other hand, I don't want to be too short-sighted and accept a reduced income for the rest of my life without a proper safety net for whatever's coming my way.  I know how selfish that sounds.  Of course, my husband is most important.  Has anyone else made this decision?  Regrets?

WaltK
Friends

Hi Alice

Those were tough suggestions....a convalesent hospital and a rehab facility. There is no way that I would want to live seperately from Leslie. If it came to assisted living I guess I would be right there with her. You could suggest to these friends that what Scott wants and needs is a visit from them to give him someone else to talk to and laugh with. If it became a regular thing than it might give you a little time to yourself which we all need from time to time. A few years ago I found out that a fellow I occasionally worked with was in a Masonic home with no immediate family nearby. I talked another friend that worked with us to go with me and visit him. We went about everyother week for a few months. He always had a big smile on his face when he saw us and was able to talk about the different jobs we worked on. He passed away and I didn't realize it, so the next time we went to see him he was gone. The staff came up to us to let us know what happened and told us how much those visits meant to him. We were glad we brought some joy to him. Maybe some of Scott's friends could visit and brighten his day.

It is good that Scott is coming back from the mini strokes and getting his appetite back. Sometimes food can bring your spirits up. When Leslie was on chemo for the breast cancer, nothing seemed to appeal to her appetite. She said the only thing that tasted normal was pizza. We ate a lot of pizza and that became a running joke years later when ever we get a pizza.

The air mattress isn't a bad idea at all. It allows you to inflate or deflate it to make him comfortable.

My cats are bugging me and walking all over the keyboard, so I'll sign off for now.

Walt

AliceR
Friends

Hi Walt,

Thanks for your input.I was surprised that these friends had even mentioned it, having known from the beginning that I would never want to be apart from Scott,and I had just mentioned it in our conversation. The one friend of Scott's had mentioned getting together more often but that was before we went out to dinner. Yes, it was his best friend/fishing buddy that mentioned rehab.I guess we will see what happens now. Maybe we will look around and see what's out there that he and I can do together,we just might make new friends.:)

That was so nice of you to visit a co worker, and you brought such joy to him.

I'm thinking about pulling out the old cookbook and see if I can dublicate Scott's receipes,he cooked like a chef,:) he liked to try different spices,and meals were great! He would cook sometimes on the weekends and did the holiday meals.

You have cats too, we have one,she likes to run around the house,like a crazy cat and be chased.:)

                     Alice

WaltK
Decisions

Kathi,

Retirement is a BIG desion to make. I was forced to retire at the age of 50 (company downsized) and stayed out of work for about 6 months. I felt that I wasn't contributing enough even though I was recieving a pension. I ended up back at the same company as a contractor and that made me feel better about supporting the family. There were times I didn't work so I could provide care for Leslie. In my situation it worked out smoothly because I could work when things were going well. I put in another 16 years only taking a little time off. Even when I retired the second time it was a difficult decision. If you have a situation where you could continue to work on a part time basis or at different times during the year it might put your mind at ease about the future finances. On the other hand, I've never heard anyone say, I wish I had spent more time at work than with my family. So I know you will give this problem a lot of thought. You might feel better if you talked to a financial advisor. Looking out for your future is never selfish.

Walt
 

kathiCares
Thanks for the feedback

Walt, thanks so much for sharing your retirement experience. I may well be able to work part-time or take on a contract full time for a defined period of time, if necessary. I really do want to retire early.  If I lost him before I retired, I would feel I'd made the wrong decision.

Alice, I feel for you regarding your friends.  My friends and family have been making suggestions and trying to help for years now.  Walt is correct, they do it out of love.  And a huge lack of understanding.  How could they understand?  I sure didn't understand what this was about until I was in the midst of it.  Every time I show up at a family event without Dennis, it starts.  What's wrong with him? Couldn't they just change his medications?  Maybe if he...  And I feel some judgment from them that, if they were I, they would stay home with the poor, sick guy and not attend the event.  Sigh.  I've learned to ignore it - most of the time.  Sometimes I want to scream. Dennis, of course, would be very upset if we (daughter and I) stayed home from an event because he was more ill than usual.  He wants us to go!  Fortunately, he is able to take care of himself almost all the time.  He takes his medications (32 per day), eats if he's able, walks the dog.  And we're only gone for a few hours.

I do have a continuing frustration with Dennis, though, that I suppose I have to talk about.  Before he became ill, we spent a lot of fun time together doing DIY.  We were quite good at it and enjoyed doing it.  Now, though, there is no time and certainly no energy for that kind of work.  My dream would be to live in an apartment with only what we need - SIMPLE!  He doesn't want that at all.  I think he feels useless unless he's doing something around the house.  Here's a good example - he insists on mowing the lawn but he doesn't have the strength to do it all at once.  So he has a good day and gets about a third of it done.  Another good day might not come along for a while so our grass is always several different heights and the lawn mower, rakes, edgers, etc. sit out in the yard all the time (no energy left to put them away).  I say, "Hire someone!"  Last summer I insisted on it but it didn't last more than 2 weeks.  Our house doesn't have a single finished room because he can't quite finish anything and tools are lying around everywhere.  If I try to put them away, he says that he's going to use them tomorrow. I don't want to take away his projects since they keep him interested in life but I'm going crazy!

That's it for that rant.  Thanks for listening.

sherivanv
Hi to group - Reading the posts

Hi all

I've been my hubby's caregiver for almost 15 years.  At 43, he was a pedestrian hit by an auto at 68mph.  He has a TBI and other disabilities has is good enough that I can work.  I totally understand the overwhelming feeling of trying to let him do projects but also want to have things cleaned up.  I, on the other hand, have a hard time keeping up with housework and chores that he's not able to do.  I find that I've finally gotten to the place where I say "if i don't get it done today, i'll try tomorrow."  I've learned not to make statements like "i'll do it tomorrow" because we don't know what tomorrow may bring.  Some days I don't get anything done that I'd planned on.  I also try to balance letting him feel independent with him not being independent.  I used to pray for him to argue because then I knew that his brain was working faster.  Boy, did God answer that prayer.  He argues about everything.  Geesh.

Luckily, he knows in his heart that I am doing the best I can and hold his best interests first.  I've had to give up on things I enjoy so that we can do things together.  I'm making him go camping next week.  He used to be the first one to suggest going.  

He's now in stage 3 of 4 with heart failure.  It's sad because he's worked so hard to get where he is and now this.  Because he worked hard before, he doesn't want to work hard now and has given up.  I'm not sure what to do about that, but that's why I'm making him go camping.  Yesterday, we went to a wilflife park where you stay in your car and drive through.  We both loved it and he didn't have to exert himself.  

Some days i feel selfish because I go somewhere without him.  I've found that I need a little time on my own where I'm not working.  I have my own health issues and all my doctors have told me I need to camp.  Luckily, we have a place I can go that's very close to home and he can drive out if need be.  Even a night away works well.  I have even brought the RV home and slept in the driveway. ;-)

I've got a bit off track.  Anyway, caregiving is frustrating, but I wouldn't change anything I've done in the last 15 years with him.  I'm also hoping to retire early and hope he will be with me when I do.

Sheri and Ed

AliceR
Welcome Sheri

Welcome Sheri,

You've come to the right place. Here you will find support.Keep doing what you're doing Sheri. Don't worry about the house,I had a hard time keeping up with the house too. I know you feel selfish when you do things without him,but you need to take care of yourself in order to help him.That's something you will hear often here.:) I too prayed for my husband to argue, I got the same results you did. :)

I recently lost my husband to cancer and I spent all my time with him,it was well worth the time.

Sheri, next time,when you come in,click on page 3 and last post,and you will get into the new conversations and you will welcomed warmly.I came looking for you when I saw your name.Hey,I saw another female,so I came to bring you to the new conversations :) I'm glad you found us.

                         Alice