Are you a male caregiver?

[AARPTeri]

Male caregivers aren't as quick to open up when they feel stressed or overwhelmed by caregiving responsibilities.  Post here and let us know if you are a male caregiver and how do you get relief?

A great article to read by our expert Dr. Barry Jacobs - https://www.aarp.org/caregiving/life-balance/info-2018/male-caregivers-support-emotion.html

[Melomaniac]

Update

 Yesterday my wife and I drove from Washington DC to UNC Chapel Hill, NC to talk to an oncologist about a clinical trial there and find out if she was a good candidate for the trial. Our oncologist feels that this trial may offer better resistance because of the genetic make up of her cancer and the tested results of the parp inhibitor drug that's part of the trial. In the end, we feel that it might be best to continue treatment closer to home since there are still some other drug regiments that have been approved that may work better at halting the spread of her pancreatic cancer. It keeps us closer to home and allows us to hold off on this or other possible clinical trials later if we need them. So, CT Scans next week to ensure that it hasn't spread further, then chemotherapy using a different treatment with irinotecan. We're choosing to stay positive and preparing to deal with the expected side effects in hope that this is the answer or at least gets us enough time for researchers to find a cure.

Thanks,

Joe

[JaneCares]

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@Melomaniac wrote:

Update

 Yesterday my wife and I drove from Washington DC to UNC Chapel Hill, NC to talk to an oncologist about a clinical trial there and find out if she was a good candidate for the trial. Our oncologist feels that this trial may offer better resistance because of the genetic make up of her cancer and the tested results of the parp inhibitor drug that's part of the trial. In the end, we feel that it might be best to continue treatment closer to home since there are still some other drug regiments that have been approved that may work better at halting the spread of her pancreatic cancer. It keeps us closer to home and allows us to hold off on this or other possible clinical trials later if we need them. So, CT Scans next week to ensure that it hasn't spread further, then chemotherapy using a different treatment with irinotecan. We're choosing to stay positive and preparing to deal with the expected side effects in hope that this is the answer or at least gets us enough time for researchers to find a cure.

Thanks,

Joe

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Hello again Joe,

That's about a five hour drive, isn't it? Whatever decision you both make is the right decision. Staying close to home is an excellent quality of life choice. Contributing to the knowledge base of science by participating in a clinical trial is also an excellent choice. You are both so lucky to have each other, and i hope you have each other for a long time to come. 

Years ago, we're talking mid-2000s, i worked in a small health education company, and we got a grant to develop a decision making tool for pancreatic cancer patients. This was before most people had internet so it was on a CD-ROM. How quaint. I remember one thing from all the research we did. I learned there is a nerve block that helps with the pain of advance pancreatic cancer. So i offer that to you. If pain starts being an issue for her, as the oncologist to refer her to a pain clinic, neurologist, or anesthesiologist who works with cancer pain, and see about that block. Pain is terrible, and it really can be ameliorated. Also, don't be afraid of opioids. In the hospital i work in now, we are part of a state wide initiative to wean most patients from opioids... most patients except for cancer patients. Long acting opioids are the very best thing for cancer pain, period end of story.

I hope both of you have the opportunity to enjoy each other, enjoy the things you've always loved to do, and if they can't be done anymore, like say ocean surfing or skiing, you can watch movies about other people who do it. I wish you would keep writing us all and reading what others write. It helps all of us feel less alone.

All the best, Joe the Mellow,

Jane

[Melomaniac]

Hi,

 I've been a caregiver for my wife since her diagnosis of pancreatic cancer 4 years ago. Like many of the posts I've read, walking/running/riding are really good stress relievers for me. I like working with my hands, so I get into doing little DIY projects around the house. I also love music, so I spend time playing music and listening to relax. Great question.

[JaneCares]

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@Melomaniac wrote:

Hi,

 I've been a caregiver for my wife since her diagnosis of pancreatic cancer 4 years ago. Like many of the posts I've read, walking/running/riding are really good stress relievers for me. I like working with my hands, so I get into doing little DIY projects around the house. I also love music, so I spend time playing music and listening to relax. Great question.

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Hello Melomaniac. Great handle. Sounds like you really ARE mellow. She's a long term survivor, that wife of yours. Wow. Working with your hands and playing/listening to music are great ways to de-stress since they use different parts of the brain and give you deep satisfaction. My hat's off to you. If i wore a hat.

Jane

[Melomaniac]

@JaneCares

Hi Jane,

Thanks for your comments on my post. I had stated to an earlier comment, it's nice to know that we aren't required to be Superman and that we don't hold ourselves to that standard. It's encouraging to know that others are understanding of the difficulties of caregiving and that many others have been have done it and share their experiences here. It helps more than I can say and I wish I'd done this earlier, but at least I'm here now. Thanks again.

Joe

[AlanP183626]

WIFE DIED TWO MONTHS AGO.- STILL GRIEVING--MARRIED 64 YEARS

HAVE NOT BEEN A FAN OF SENIOR CENTERS

HAVE VISITED RECENTLY FOR FIRST  TIME

HAS HELPED ME INTERACT WITH PEOPLE

[SaraL218963]

Sad for you. Prayers out to you. Try to keep her memory alive in the way you reach others. Focus on doing things that matter, and honoring her. Friends and family will be cornerstone. 

God be with you in this time.

[JaneCares]

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@AlanP183626 wrote:

WIFE DIED TWO MONTHS AGO.- STILL GRIEVING--MARRIED 64 YEARS

HAVE NOT BEEN A FAN OF SENIOR CENTERS

HAVE VISITED RECENTLY FOR FIRST  TIME

HAS HELPED ME INTERACT WITH PEOPLE

---

Two months ago is a very short time ago. Of course you are 'still' grieving. You will grieve for the rest of your life, but hopefully the incredible weight of the grief will lift slowly and steadily. It will take a long time. After the long winter, spring will come again. But you'll always appreciate those 64 years. 

Do you have children? A brother or sister? Cousins? Other people you can reach out to? Isolation isn't good, although it's understandable. 

So glad you wrote. There is a grief community although it tends to be quiet: aarp.org/griefcommunity.

Keep writing us? What do you enjoy doing, even though right now it feels like the enjoyment has all but drained away...

Jane

[TimothyD134981]

Is more important than we think. family is good, but sometimes it’s like canned laughter. they know how to respond. You know what to expect for the most part.

So sorry to read of your wife’s passing, 64 years is a looong stretch. 

social life isn’t a crime and shouldnt be a chore. 

Don’t isolate yourself, then Depression sets in. 

If you only go for a meal, you’re missing the point. 

Share your interest and listen to others. It’s not all about you.

[AlanP183626]

THANK YOU SO MUCH FOR YOUR COMMENTS.

I JUST MISS HER SO MUCH

[DavidM942136]

I was the caregiver for my mom the last two years of her life. She moved in with me in a house I bought with her eventual needs in mind. Two stories, with a ground floor that was laid out in a way that we could turn into a separate ground floor apartment for her, including a bedroom, TV room, bath, laundry and full kitchen. My care mostly was visiting with her after work and on weekends and taking her to the doctor, etc. until almost the end. She could cook for herself up until then. At that point, I prepped meals for her as well. My sister would come to the house and stay with her when I went on vacations or had other commitments. My older brother was no help at all. 

[TimothyD134981]

I care for my 69yo wife who has copd, bipolar, chf... 24/7 oxygen and a fall risk.  Relief is a short escape to run errands, walk the dog or play my horn. Anything to get out of her hair. A part time job is a relief too, but I got canned from my school bus driving job, so I’m kind of stuck. No family or outside help comes in. Toooo much togetherness makes nitpicking easy. Hope for the best when I leave her alone. 

[JaneCares]

Hey TC 

So glad you wrote. You write so honestly. Yup, nitpicking is common to our species!  You have a big job! You make sure she has all her meds, her oxygen, the concentrator and the portables for trips, her appointments, which include perhaps a cardiologist, a psychiatrist, a primary care doctor, maybe a pulmonologist? Since she gets short of breath, you probably do most of the chores, and maybe most of the errands. Does she still smoke? Do you remind her to turn off the concentrator before she lights up? 

I hope you both have friends or a good neighbor or someone who comes to see you, visit, watch a movie? Watch dancing with the stars? So that she has reason to get out of her PJs and you both can put out some chips and dip and interact with someone else besides each other. Do you have adult children? 

There are so many reasons to save money in a situation like this, but i wonder, what if you hired one aide one day a week to hang out with her, do some light cleaning, give her a thorough bath, change the sheets, and watch some daytime tv. You could take a longer break, go to a matinee. There's a new Tom Clancy movie out. What the heck. Most care recipients state right away that they don't want any strangers in the house. And then most of those become very attached to the aide and look forward to their coming. It's like a spa day. It might be worth the expense and it's cheaper than therapy!

Just a thought.

Mostly, kudos to you for taking care of your wife and yourself. Women are socialized to do this, men not so much. At least you have a sense of humor. What do YOU do for fun?

Thanks for writing, Write more!

Jane

[TimothyD134981]

No family nearby. She has a Sister in Florida. No friends we can call on. she has zero friends after living here for over 20 years. She has one homeless son in Florida. Private pay nurse if we really really need, thanks to my siblings offer.

No cable tv. Cheap tv got canceled because nobody watched it for over a year. digital TV is the biggest joke ever pulled on the American people. all that did was create more jobs,for China mfg tvs and antennas. She’s not interested in movies or much of anything. Total Debby Downer.

she quit smoking in 11/2015 after developing pneumonia. It’s gone downhill ever since. Knew she was checking out and packed her bags for the grand trip. still packed and waiting on the train. 

BTW, I’m 61, she’s 69 going on 90 and bitter to the core.

She has recently been diagnosed with dementia/Alz? and prob Parkinson.

My main fun is playing cornet/trumpet in our local community band. I have made a nice stack of tips busking.  Learning guitar also. love my time doing my music.

[bl4598]

Kudos for doing your music. Keep it up. If you can take a walk now and then that would help you too.

[DrBarryJJacobs]

Dear TC Daniel,

     You sound like a very resourceful guy with a clear-eyed vision of what you have taken on. And yet you also maintain some sense of humor. (And musicality!) All those are essential characteristics for sustaining yourself on what will probably be a long, slow, downward course for your sister. If she is unable or unwilling to say this to you (and perhaps your siblings neglect to say it as well), then let me say it: She is extremely lucky to have you in her corner. That doesn't mean you're perfect. None of us are. But it means that you are hanging in there and doing your best.

     That said, I agree with JaneCares that creating protected time for yourself to have some fun would be very important. Perhaps that is what the busking is about. You also sound like a caregiver support group might provide you with the venue to get things off your chest that perhaps only other caregivers could possibly understand. I would also expect that, with your creativity and good problem-solving, you would be a real help to others in your group.

     I wish you luck and abundant patience and a healthy regard for the good works that you are doing. Please write here again when you get the chance. Take care, Barry J. Jacobs, co-author of AARP Meditations for Caregivers

[TimothyD134981]

Thanks for your words of encouragement. I feel sooo beat down here lately.

Latest update is she wants to go a SNF, but can’t because:

1. She checked herself out of the Hosp last time. Didn’t want to wait 3-10 days for a bed, 

2. Local SNFs have a rule or it may be law, that hospital releases get first dibs, so she shot herself in the foot when she checked out and came home.

3. There is a waiting list that must be a mile long for people who want to get in who live in the community.

4. she set the bar high! She will require a PASSR level 2 facility because of her suicide attempt back in 2016. not just any facility will do .they must have a shrink on board or available. 

5. Her complaints from 4 previous stays range from food quality, roommate with a bowel problem, room sprays by service staff, and many more. this limits her to one or two out of 6 locals. See #2 above.

there are other snfs in a broader area, but travel time and gas for me is a factor too. even  a weekly visit could take 3 or more hours round trip, just to hear her complain about......   

[JaneCares]

Just a thought as you consider SNFs. You know a whole lot about your options already. But have you talked to "A Place for Mom"?  They are knowledgeable and quite wonderful, they really know the various settings. With her need for psychiatric support, it will be tricky, and since she sounds pretty picky and difficult in general, a good match may be elusive. But how nice it would be for you to visit her instead of live with her. Perhaps i'm wrong here. But she sounds like a challenge. Anyway, carry on and thanks so much for responding. we all learn from each other. keep us posted!