Long-term caregiving: need a place to vent

Posted by bradmm @bradmm, Tue, Mar 12 8:45am

So I’m copying an email from the Blood Cancer group.

I guess on one level, having to cope with long term cancer is better than the alternative. 🙂 However, my wife was diagnosed with CLL in 2006, had chemo, remission 2010, and started Procrit shots for MDS, caused by the chemo, in 2013. I have played cheerleader since the beginning and am constantly trying to point out the good side of things but we’re both wearing down. She was getting Procrit shots stating in 2013 every three weeks but her HGB has gotten as low as 6.2 as of last week so now she’s having weekly injections. This is dominating our lives and, whereas she used to be down the day of injection and a couple of days following, now she’s getting down several days before and after meaning it’s near constant. I have gotten her to do therapy with a psych but that was not helpful. Her other main issue is insomnia so that can have a big impact on her state of mind as well and, in reality, she has her bright moments but all this is always right under the surface. We both retired last year so we’re both at home together a lot. Although we have gotten involved with some stuff outside of the home, it doesn’t negate the underlying stress. Our kids/grandkids are not close by. I feel that my role in just holding things together has grown larger since she’s retired and doesn’t have the constant distraction to change her focus. I joined this forum, in part, just to have a place to vent so thanks for that.

Brad. Thank you for connecting. This is the place to get your very understandable feelings out. My husband is always ill. Open heart surgery and severe asthma issues . He's not quite 64 and does not work as he uses Medicaid and his health care is extremely expensive. We live in a small town which doesn't offer much distraction. To bring in an income other than social security I work part time as a caregiver but then when I'm home I feel like I have to be upbeat and positive for him .I'm frustrated and struggling to be a good caregiver at home but it is hard. So I think you will find many of us out there who have all sorts of feelings that cause the stress you're talking about. I find talking to people who understand vital to get through this .

Thanks, Georgette!

I haven't had a place to talk about it until now.

@bradmm @georgette12

I understand both your concerns and frustrations. It is more the alteration on Quality of Life that impacts most of us.

Our story is a little different as we are not dealing with specific diseases as you both describe, which are far more serious IMHO, but an ongoing complication from major surgery which was ignored by nursing staff and surgeon until discharge initially 3 weeks post operatively in a private hospital. He was very sick at the time of discharge, but was adamant he be allowed to come home. Within 24 hrs he became so unwell i had to call the ambulance and had him readmitted to a public hospital where he was diagnosed as very seriously ill and required emergency surgery for a pelvic abscess and peritonitis following an undiagnosed paralytic ileus an electrolyte imbalance.
He had had 2 admissions to ICU, 1 post operatively and the second for severe dehydration, malnutrition and bactaeremia 8 days later, resulting in an acute kidney injury. He had a near death experience the day he was readmitted, and the suggestions by the intensivists were over ridden by the surgeon. He refused to agree to a CT scan, not once, but twice, which would have diagnosed what was painfully obvious.
His initial surgeon told our oldest daughter he had had a 'haematoma', wirh no mention of infection. He visited on a regular basis during his stay in the public hospital and sent me texts to say how much better he was! He had direct contact with the General Surgery Team however.

After a lengthy stay in hospital he was discharged at the end of last year. It was not until I noticed his most out of character reactions to things that had never bothered him previously and his severe anxiety when he I was not in his sight that I did my own research and found out about PICS and this group.

We are 5 months down the track with no guarantee things may improve. His abdomen remains distended and his bowels have never returned to normal, some days rendering him housebound. I now understand the term 'Anal Fixation'!!!!

Once discharged people generally felt he had recovered and even our 3 daughters who do live locally, who gave up so much of their time during his hospital stays, have withdrawn somewhat. He has been heavily involved with 2 NGO's (Non Government Organisations) State Boards for the past 12 years and has had to standown, as he is unable to fulfill his judiciary duties. It is as if he has had a leg amputated and I am expected to provide all support and any physical duties. It has been a nightmare. I resigned as a casual RN to support him for the suggested 6 – 7 week recovery period, not expecting it to be months with no real resolution in the short term. My real job now is caring for him.

On a positive note he has shown slow signs of progress and has been able to contribute to one of the NGO's from home, close to the toilet which has returned some value to his life and good for his mental health. Keeps him out of my hair a little, but he remains dependent in many aspects. He has last week regained his confidence to drive with me beside him for encouragement.

My heart goes out to you both and guess I need to vent too. Your stories are rather heart rendering and it can be no coincidence we have found our way here. Take care of yourselves which is not always easy I know. Hugs to you both from Australia. X

Hi @bradmm and everyone on this discussion. I hope you don't mind, but I changed the title of this discussion to be more relevant to the topic: "Long-term caregiving: need a place to vent" Brad, let me know if you would like a different title.

As you've already seen, this is a very relevant topic that affects many caregivers regardless of condition or disease. Thank you for starting it.

@bradmm Glad to see you made it over to here! As I said, I think you'll find several folks here who share your need, as caregivers, to vent and share their feelings and (at times) frustrations!

I used to keep an old pillow on our livingroom sofa, which I often used as a punching bag when things got tough!

Cheers and great to have you here!

Colleen, thanks but I'm not concerned title. I do like the specificity of it because it brings people with similar experiences together.

Scott, HA! I don't feel the need to punch, my wife and I maintain a very good level of communication so it never gets to that point. Neither of us can change the reality of the situation so my focus is always on trying to see the glass as half full. She gets sucked into the opposite perspective so I am the cheerleader.

I like the new title as some of us have years of caregiving ahead even though not physical cares. My husband has been in a care center for 2 years the middle of May. I no longer have do the physical caregiving, but emotionally I still need some bolstering at times. It is so hard to see a formerly very physically active person no longer able to do anything accept feed himself. And even then most of it lands on the bib or his lap. He is so independent that he resents any suggestion that anyone help him. I was there to visit today and the director followed me into the building saying she had just returned Des Moines and they were now limiting visiting to only essential visits since they have a flu patient at the home. She did let me in to see him for a few minutes. Last year it started like this and they were under quarantine for a total of about 3 weeks before we were able to visit. His 89th birthday is next Sunday and we were planning a family gathering with cake and ice cream but I guess that is off as of now. The director suggested I call before trying to visit again. It is 45 miles from our home, so I will surely do that. just one day at a time.

@rmftucker

I like the new title as some of us have years of caregiving ahead even though not physical cares. My husband has been in a care center for 2 years the middle of May. I no longer have do the physical caregiving, but emotionally I still need some bolstering at times. It is so hard to see a formerly very physically active person no longer able to do anything accept feed himself. And even then most of it lands on the bib or his lap. He is so independent that he resents any suggestion that anyone help him. I was there to visit today and the director followed me into the building saying she had just returned Des Moines and they were now limiting visiting to only essential visits since they have a flu patient at the home. She did let me in to see him for a few minutes. Last year it started like this and they were under quarantine for a total of about 3 weeks before we were able to visit. His 89th birthday is next Sunday and we were planning a family gathering with cake and ice cream but I guess that is off as of now. The director suggested I call before trying to visit again. It is 45 miles from our home, so I will surely do that. just one day at a time.

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@rmftucker ‘one day at a time’ says it perfectly! There were stretches of caregiving when I couldn’t even think about more than doing it again tomorrow, let alone weeks, months, etc. This was especially true during the years my wife could no longer communicate her needs to me.

I hope the flu leaves your husband’s facility very quickly! Please tell him Happy Birthday from a long distance friend.

Strength, courage, and peace!

@bradmm I just read your post and wanted to give you a word of encouragement. Earlier this year I was so tired from caregiving duties. Day after day there was some new demand on me. Daily disasters became the norm to the extent that I even stopped having a rush of adrenalin and surge of worry when a new crisis announced itself. I wanted you to know my post under “Weary” prompted a number of helpful posts by others, you might wish to check them out. I found it very hard to reach out and admit my distress. I’d read of someone else’s troubles that seemed greater than mine and then would feel guilty that I was complaining. I felt sorry for myself and then felt even worse because I felt that way. You are doing your best I can tell. I wish I had a magic wand to help. Just know this is a place to tell your story—especially on the days you feel like railing about the unfairness of it all and how you’re at the end of your rope. No one will judge. We’ll just nod as we put on our “Been There, Done That” t-shirts and welcome you to the fold.

Susan2018, I was just venting. 🙂 My wife FEELS pretty good most of the time despite years of first chemo and now weekly, sometimes 2X/week, procrit shots to try to keep her blood count up. The only wearing part is that it's always on her mind and, thus, always being talked about. I always tell her that nobody knows when the end will come, it could happen to me tomorrow, so let's focus more on the good part of today! It can always get worse. I can't judge her for thinking that way, I haven't walked a mile in her moccasins, I just try to promote a more positive outlook. Thanks!

Those of us experiencing long term caregiving all have those times when we can hardly get out of bed or visit again. My husband has been in care center for going on two years. He was always a very active friendly person and his personality has totally changed. He is so agitated, angry, etc, so much of the time, but the people at the care center are so patient and caring toward him, that it helps me to handle the stress when I visit. They have been on stringent visiting for about 3 weeks and I haven't been able to visit only a few times. His 89th birthday was March 17, and I did go but we had to cancel our plans for cake and ice cream, and that was hard. I did take a decorated cupcake for him and he enjoyed it but I don't think it registered why I had done that. He sleeps most of the time, and I try to visit 2 hours every other day as it is 42 miles one way.

I don't visit him at meal time anymore as he becomes so agitated if any man looks at me, and I can't handle that. He was never that way before. I just have to keep saying it is the disease and not him. He needs total care now so there is no way I could care for him at home. My son and daughter who live close help me to stay in my own home, but it is getting harder so that is another hurdle I will have to face in the near future. Downsizing 60+ years of reminders of memories is hard. But I am determined to try to sort and give away things, so my family doesn't need to do that. I have helped empty apartments of 2 aunts, my mother-in-law, and my parents, and I don't want to leave that to my children.

@rmftucker You have a heavy load. You are so thoughtful thinking of your family and wanting to do as much as you can to downsize. I have been left to deal with a five generation farmstead. It is so hard, I get why previous generations didn’t do it. But I’m going to get this done if it kills me. I worked in a care facility and the situation as you describe it is often the case. That is a long trek for you to make every other day to visit. Please give yourself permission to look after yourself too.

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