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This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.


I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.


Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.

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Anche,

I would never judge. I have been judged and it hurts so much!

No one truly understands unless they have been in our shoes.
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Thank you Needhelpwithmum, it is good to know someone Understands without judging!
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Anche,

I understand how you feel. I cared for my mom for 15 years in my home.

It is depressing at times. It truly is.

You have every right to feel as you do.

I’m so sorry that life is hard for you at the moment.

My mom would do things that she shouldn’t have done too. We become their parents, having to monitor their every step. My mom would reach for things and then fall. She had mobility issues due to her Parkinson’s disease.

We worry for their safety. We become concerned about our well being. As caregivers, our lives are interrupted and we feel cheated of living our own lives.

Hoping that things will be better for you soon.
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One more thing, after 11 years I am afraid I can't resist much longer... My mum is not that bad but is not totally independent either. I cannot leave her alone too long. I often feel I have no longer my life to live. I was really down today, thinking there is no hope for me to rest my mind.
Again that thought: she will live to 100 years I won't reach 50. And then thought, well only 10 months more... But I so want to live, enjoy my husband and son... As John Bonjovi sang: I just wanna live while I'm alive
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I am also having up and downs... More of a down today when I found out my mum used a candle to lit the fire in her fireplace instead of asking me... She then lied but there were wax drops all over the floor...
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Bookluvr,
Happy New Year 2021!
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The question is, Caregiver, how are you doing?

I am doing good. I'm blessed.

The best thing is, my day has been Ordained by God.

That means, I'm right where God wants me to be.

Taking care of people and showing the love and grace of God.

God, I love you and thank you.

Nothing can change me. I have been set free and I am in the Master's hand. The one that owns the whole world.

Halleluah : )
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Wishing good luck for your husband on Sunday, I’ll be thinking of you both. Waiting for things to start is difficult, and maybe when you are up and running and into a routine it will be a little better for you.
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Thanks, Golden

I feel a little better. The waiting time to begin treatments was getting to me.

Now that I know he is starting his treatments on Sunday, I feel like we are no longer hanging in limbo.

Normally they don’t do treatments on a Sunday but since it’s a holiday week they are bumping it up so he will not have to go in on Thanksgiving day.

All together he will get 40 radiation treatments. We are hoping for the best outcome.
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(((((((hugs)))))) nhwm - such a difficult time for your family on top of covid.
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Chris,

I do enjoy a walk outside or even just sitting on my porch in the front of my house or the patio in the back.

My husband will go for walks too. In his younger days he was an avid runner. He still has a lean runner’s build.

Being outside is nice. Or even looking out of a window.

He has been working mostly at home but occasionally has to go into the office and he has a huge wall of windows that overlook the city. It’s a nice view.

Our climate is mild here in New Orleans. We don’t have a long bitter cold winter.

I have a Japanese magnolia tree in my front yard, along with camellias and they bloom during the cooler season.

I love the burst of color this time of year from my camellias.
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NeedHelp, so glad you were able to share a joke and laugh with your husband. It is good for both of you, and can help break the tension and anxiety you are feeling. Kindness and compassion have been more important than ever this year, and I really can’t complain as we have managed to stay safe so far. I am full of gratitude to all those key workers who have looked after the sick and ill, put food in the shops, kept the various supply chains running and delivered goods to us throughout the year. Another thought to help with your worry and anxiety: are you and your husband able to get outside and enjoy nature where you are? I have found that during my peak worries I’ve felt much better after time outside. We are lucky to live amongst beautiful countryside and when I am out there, Covid and other worries seem much smaller and insignificant. Part of my garden and the fields beyond have the remains of old medieval farming methods from hundreds of years ago, and this just reminds me that all of this will still be here long after I have gone. I find that strangely comforting.
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Chris,

You nailed it. We are living in unusual and tense times.

Yeah, we are dealing with it as best as we can.

We will do as every generation before us has in trying times, right? We will press on. Hopefully learning quite a bit on the journey.

Stay safe, Chris and I will rejoice with you when you reunite with your son.

I miss my daughter terribly. She moved to Denver shortly after her university graduation. She had a Covid graduation where they received diplomas in the mail and LSU did do a virtual type thing so she read her name on the computer screen. What a world we are living in today, huh?

One day, we will get back to a world where we can share with each other again, instead of being so on edge.

Due to my husband’s cancer we can’t travel and wouldn’t during Covid anyway but we hope to make a trip to see her in the future.
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Alva,

Your response is very helpful to me.

You have given me food for thought and I think I am going to be able to face this situation better.

Plus the anxiety of waiting to get started with my husband’s treatments was starting to eat at me.

Very interesting to read your description of my husband.
You have my husband pegged fairly well!

I suppose that having years of nursing experience has given you much insight on these things or you are naturally intuitive.

Not to mention your own experience with your own cancer.

I cannot tell you how much my mind is more at ease since my husband’s first simulation this morning.

It went well. All the prep work has been done, he hates having the full bladder but it goes with the territory.

Alva, May I share a giggle with you without you feeling like I am awful? Hahaha

I have eclectic taste, always have. My husband is traditional, as straight laced as you can get! No tattoos on his body! I don’t have tattoos either but my daughters, have a few and it doesn’t bother me.

My godson has ink all over himself because he’s a musician. I dearly love my godson. He’s an extremely talented guitarist.

Well, my husband has ink markings on him to target for his radiation.

I had to tease him about it and told him that I was going to tell our daughters that he has a few new tattoos!

Of course the ink is temporary and will fade later but somehow this tickled me because of my hubby’s personality.

My husband does have a sense of humor and laughed. It was nice to be able to laugh with him.

Thanks again, Alva. This is an emotional journey but after talking about it on the forum I do feel better. There are many kind people here and I thank all of you.
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NeedHelp, Also, if sometime (not right now) you want to leaf through a fascinating HUGE, often a bit too scholarly book, try the book The Emperor of All Maladies by Siddhartha Mukherjee, won the Pulitzer Prize. It will let you see cancer as the little animal it is. A very diverse and determined little animal. It's basically a history. We are moving so fast against it now with tailor made therapies and gene theory playing in. Huge changes even since this book was published. People who once had to die are now being treated and living long lives almost as though they had a chronic condition.
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NeedHelp, a few answers to your questions.
You asked "It has not spread, so how could it be aggressive?"
They stage cancer types. They can now tell exactly what type of cancer it is, and some are more aggressive than others. Some have more treatments available than others. Cancers are as individual as thumbprints. Some are dependent on hormones, some don't feed off of them. They are very individual. I had breast cancer, but had what is known as triple negative, which is more aggressive than some others. So basically when they see an aggressive cell type they hit it with everything they have.
I think you would think less about needing to share this with friends if you and hubby were talking more about it. But he doesn't wish to now. You said you have videos and folders full of info and right now you need to read them. Also consider a support group. You are then sharing with strangers. Only thing I don't like about them is you hear everyone's horror stories. Not all of us are into horror stories.
As to these folders, whether you read them or not, he MUST. Sadly. Radiation is likely the most benign treatment for this cancer, but given WHERE they are radiating there CAN be symptoms and side effects and it is CRUCIAL to know when there are symptoms of side effects and that they get reported quickly. The bowel is close to this area and while they are better and better at pinpointing sites with markers, the bowel is right there. It can become very irritated with consequences of that irritation. He needs to know side effects and what to watch for by the time treatments start. If he can find, or you can find, a forum for sufferers of his type of cancer getting similar treatments, whether on FB (almost everything has a page, and I am a member of several breast cancer pages) or somewhere else, there is a wealth of information there for you or for him. The more honestly the two of you can talk, then the less help you will need to tell others and get their support. Watch the videos with him. Make a list of questions for the MD. He is the General and you are his best Lt. in this particular little war; you need information, and you need communication. I will just tell you, you are in the beginning of this battle; in the beginning it is all blind feeling your way, gathering info, thinking, confusion, crazy differing input, way more suggestions than you ever wanted (including my own). You are BOTH going to get GOOD AT THIS. And your advocacy of one another for one another will get you through, and will make you proud of yourselves. There will be scary moments. But like I said, you cannot STAY scared all the time. Eventually real life comes leaking back in.
I remember when I first had cancer, the thing I hated most was the thought of losing my hair, not my life. Like your hubby I was hit with the fear of wearing a SCARLET C on my chest. I didn't want others saying "How aaaaaarrrrrrrrreeeee you ......." with that awful awful tone of pity. I feared pity more than I feared cancer. I know exactly how he feels about not wanting to wear a Scarlet letter C on his chest.
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I think it's natural for us all to feel anxious and worried after the year we've had. If someone had told me a year ago that I would be sitting here now, hoping that my son is ok at college, away from home for the first time, with a deadly virus raging, and me not being legally allowed to travel to see him, I would probably have worried myself into an early grave. And yet.... we are coping. I suppose the point I'm making is that things never turn out exactly how we expect them to, and that actually we are all a lot more resilient than we might realise. It doesn't stop the worrying, but it's important to find ways to combat it, and ways that work for you.
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Gershun,

That is funny! 😂

Here’s a funny dream that I had after my daughter was born.

I didn’t drink coffee during my pregnancy because of the caffeine.

Then I breastfed her so I didn’t drink coffee.

I really missed my coffee. I had a dream that I was nursing her and instead of milk it was cafe au lait! Hahaha

I couldn’t believe that I had a dream that my breast milk was mixed with coffee! Wild, huh? But funny!

Gershun,

Thanks for the laughs!
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The last dream I had about my mom I could overhear her talking to my niece in the next room. She was telling my niece about a revival meeting she had been to and how so many people had accepted God into their lives. Then she came into my room all excited, kind of a little girl who had just seen her idol. I turned around and said "What? Did you just see Elvis?"

Then I woke up. Lol.
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Thanks, Gershun

I guess I just want to speed it up and have it behind us.

Are your dreams of your mom of everyday things? My dreams of daddy are like that. We are sitting at the table drinking coffee. They almost seem like visits.

Or are they disturbing dreams? I’ve had those too about different things.

Dreams are fascinating.
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Book,

I am sorry that so many have died on your island.

It’s so sad. Covid has everyone down. It’s definitely upsetting.

We have had more hospitalizations and deaths here in New Orleans too.

There’s an uptick in cases. The mayor has canceled Mardi Gras for next year.

No parades at all this year, which is good because last year when Mardi Gras was in full swing Covid spread like wildfire in our city. We weren’t aware of it here before then.

Of course all of our music festivals had to be canceled.

My daughter’s graduation from college was canceled too. She received her diploma in the mail.
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Chris,

I know that you are right and I am going to have to focus on what you are saying.

I guess I am slipping because awhile back when I saw a therapist during my caregiver days for mom he said to me, “You don’t breathe, then all of a sudden you gasp for air.”

I wasn’t even aware of it. He taught me breathing exercises and they do help.

I do like music. I listen to music sometimes. I could check into some relaxation videos. That’s a good idea.

Funny that you mentioned your son. I understand how our emotions can get the best of us at times.

I suppose that I am missing my daughter more than I realize.

She recently moved to Colorado. I am happy for her. I don’t want to make her feel guilty about moving.
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Our little island is not doing so good with the Covid. Young, old, elderly are dying. So far (the very rare time, I checked the obit), I only know of 2 people who have died - a high school person who was one grade higher than me - always met in the computer science lab. Everyone knew I was in the lab when ALL the computers and the mainframe went 'down' due to some d*rn program that sent the mainframe into a loop - for hours. You will hear the different years (freshman, junior or senior) yell "Is So-and-So here?!" {eeek!!!}

Sigh... On Monday, my older sister called. Her husband's brother passed away due to Covid complication just last Friday. I went to the online obituary and saw the obit of the above schoolmate... so many people have died the past 2 months. So many elderlies in their 80s, young man, very beautiful young lady with beautiful alive eyes and a beautiful smile, two men with heartwarming eyes as if looking into my soul. Towards the end, the elderlies, I touched the screen and hoped they didn't suffer. Did they not go to the clinic or ER due to Covid? Did putting off medical help cause them to die sooner? ..... I think that's what got me thinking of here, AgingCare.
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NeedHelp, your posts are showing just how anxious you are about everything right now. I wondered whether listening to some mindfulness/relaxation exercises might help you to calm yourself when it becomes overwhelming? I became very anxious when Covid hit, then worrying about my son leaving home, and now worrying that he might bring Covid into the house when he comes home for Christmas. I have about 4 different downloads ranging from 3 minutes to 30 minutes, depending on what I feel I need. I just take myself off to a room on my own if I need to, or listen to one before bed or if up in the night and feeling anxious. There are times when your thoughts can overwhelm you without actually achieving anything, and I found this was a helpful way of dealing with them.
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Book,

I will check. Some groups are meeting virtually due to Covid.

That’s how I feel. It’s hard to hold everything inside.

I think that
I definitely would benefit from a cancer support group.

I am glad that you were able to join a group.
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NHWM, is there a support group in your area? You might find better support from others who are going through this or went through it....

When I was a caregiver, we had our monthly caregiver's support group on a Saturday morning. Because our island is so small, everyone seems to know or be related to someone. Before speaking my heart out or my angst, I made sure no one in attendance knew my family. It helped me a lot to destress, especially knowing I was safe to purge without any words getting back to bro. Or sis.
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NHWM, I'm sure your husband will do fine. I forgot to mention that in my last post. Try not to worry.
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Gershun,

Yes, dreams can seem so real at times.
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Speaking of sleep I've had so many dreams about my mom lately. Probably cause I've been missing her a lot.

I also had a couple of bad dreams last night. I always have to sit up with the lights on for a while afterward. 😟
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Alva,

You asked about my sleep. Sorry, I meant to answer but got distracted with the other parts of my message.

I do sleep well most nights. Some nights I am restless if I drink more coffee than I should.

Sometimes I have weird dreams and I wake up upset.

I know proper rest is important and it is an escape to sleep well.

It helps to get rest that we need. We function better overall with a good night’s sleep.
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