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.
Do you have POA for your father? I learned from my parents how helpless it is when I didn't have one for either of them. I cannot go in with them to see the doctor (clinic & ER). They won't discuss their diagnose with me - just the nurse handing me the prescription note. No mention of my parent(s) health - due to HIPAA - and my having no POA.
As for the trust issue... in my decades of helping my parents, my dad never trusted me to make any decisions because I was a female - who knows nothing. I got around this by asking my young 17 year old nephew to 'visit' us, and say, 'Grandma doesn't look so good. I think she needs to go to the ER.' After days of my trying to get him to take mom to the ER, in that few minutes with my nephew, my dad told me to call 911... I believe you will find a way around your father. *\o/*
I have this forum and don’t get me wrong, I am grateful but I find myself on the verge of tears when others ask me how he is and I have to respond by saying, “He’s fine.”
I will not betray his wishes. I love him so much. I am trying to get through this alone. I don’t want to feel resentful. He is entitled to his feelings and I know that he has his reasons for his privacy. He knows I chat on the forum and he is fine with that but for me it would be nice to be able to speak to my friends.
I was wondering if anyone else has dealt with this situation and can offer some advice to me. I would appreciate it.
I suppose that I could look into therapy but it isn’t the same as speaking to my close friends.
The other thing that concerns me is I find myself feeling like a liar with my friends and my cousins that I see from time to time.
Thanks for listening to my thoughts and concerns.
You won't feel like a liar if you just say to friends: "I cannot say, but thanks for asking".
It is a hugely difficult time for you, in so many areas, as well as the Covid alerts we all deal with.
I know what it is like needing to talk to someone, but not being able to say so many things. For privacy of the other person, makes it hard too.
Maybe you could ask one or two people and send a private message. They could delete it after reading.
I think that you do need some support right away, and a therapist is also a good way to refocus all those emotions rising to the surface, and you can say anything to a trusted therapist. The phone. Therapists are using the phone now as a perfectly acceptable way to stay in touch, and have it covered by health insurance.
If you might be at a mindset where you fear going for help because those tears are going to do away with you, just let it out a bit at a time.
Maybe someone who knows you better will reach out to you on a private message.
But I hear you, just wanted to acknowledge that.
Have you even been able to unpack from the evacuations yet?
He will be fine. Believe it. And when people ask, you tell them he is fine because he is going to be fine. Have faith, dear lady.
I guess I can try that. I used to journal when my therapist suggested it before.
Once when mom was here, she saw me writing in my notebook, my private thoughts! I walked into the kitchen to get a coffee and when I went back into my living room she was reading it.
Oh my gosh, she lit into me, trashed my therapist for telling me to journal. It wasn’t pretty. Those words on the page weren’t meant for anyone else to read but me.
You’re right, journaling can help. My husband is mostly working remotely and he doesn’t have a nosey nature like my mom so I think I will try to journal again.
Thank you for your kindness. I appreciate it. I don’t feel like myself during all of this. I find that I am on edge.
Sorry, that I can’t articulate my feelings very well at the moment.
I feel odd, almost like a fake or like I am deceiving myself and my friends by not being able to share.
Yet, I don’t wish to put myself ahead of my husband during this difficult time in his life and disrespect him by sharing his personal health issues with others.
Please keep reminding me that he will be okay. I really needed to hear that!
I find myself crying at times thinking, “What if these treatments don’t work?”
Everything is done in stages and I think everything being spread out has created more anxiety for me. It’s weeks between new scheduling can begin for the following steps.
Tomorrow he goes in for his trial run with simulation. Sunday he begins his actual treatments. Normally it would begin on Monday but since it’s a holiday week they are bumping it up so he can have off for Thanksgiving.
If he is scared, he doesn’t show it much. I know that he is concerned but he is immersing himself in his work. He’s always been a hard worker.
He never wants to be a burden on anyone. Only his work and our daughters know about his diagnosis.
Again, I really needed to hear your supportive words. They mean more to me than I can express with words. Thank you for your compassion.
I will look into a cancer support group online and also see what therapy is available too.
It is hard to keep this to myself but I feel a bit better now after hearing your responses.
Lets hope the hurricanes don’t come our way again and interrupt or delay any treatments.
My husband will have forty radiation treatments. We really want these to be behind us.
We looked at both options of removal of his prostate and radiation and the doctors agree that in his case both options have an equal amount of success for a cure.
Of course, surgery is more invasive and risks of side effects are greater. Radiation has much fewer side effects.
I think the basic thing I would say is just let yourself feel whatever you want to feel. And when he is ready to talk, just listen. Don't try to make it better, or reassure or anything. Just let him have his say. If he wants to discuss "If worse comes to worse....(I DID), then let him." When an iffy xray made them scan my lung I told my mate, no more treatment. He let me talk and said "I wish you would fight a bit harder to stay with me but I will be here for you whatever your decision is". He may never want to think or talk about it.
The friends thing would be hard for me, yeah. I get that for sure. But just you two do it your way. There is NO right way. You have your faith. I hope that is helpful. I didn't, but I wouldn't have known what to do with it if I did, hee hee.
You can't stay scared all the time. You will come up and you will see and feel great joy and beauty, and you will treasure one another all the more.
You will both be there for one another. That is huge.
Do you sleep well? Sleep was my "great escape".
Your words really hit home with me on many things.
Of course I don’t have your knowledge as a nurse. I am trying to stay informed. My husband is really good at details. It’s in his nature. He’s an engineer and he is very precise in his thinking.
The nurse sent my husband home with a folder with lots of information.
My husband said in the folder there are websites listed online that show actual videos of the procedures. He is planning on watching them. Maybe I will watch them too. His nurse encouraged him to watch the videos so he can see what is entailed during his time of treatment.
My husband has been working remotely since March and I guess I got used to that. He has been going into his office occasionally and I suppose being alone caused my mind to wonder more. How did your partner handle your diagnosis?
I can’t imagine how it feels to hear the words, “You have cancer.” I am so sorry that you endured that but so thankful that you survived.
I find myself wanting to pick up the phone to call a friend but I won’t betray him by breaking my word to remain silent.
I wonder if he will still want me to remain silent after his 40 radiation treatments.
I am not a person who tells their hairstylist everything that goes on like some women.
I have never told my neighbors all of my personal business.
I am talking about sharing this with one or two close friends.
When I told my husband that I wanted to tell a couple friends his response was, “No, if you tell one person, then they spread it and I don’t want others to know. It’s my health, my business. I don’t want people feeling sorry for me. I don’t want to be a burden on anyone.” So, I let it go and said, “Fine, I will remain silent if that’s what you want.” That’s where it stands.
Have you found this as a nurse? That some people like to keep their health issues very private.
He has always been private and independent.
He has never been an open book so I suppose that I shouldn’t be surprised how he is dealing with his situation.
Thanks so much for listening to my concerns and offering help. I appreciate it greatly.
I never turn down warm wishes thoughts or prayers.
I don’t want to be scared. I do have thoughts that enter my mind occasionally and it does get scary.
I love him so much and can’t imagine a world without him.
The tests showed no spread and the bone test shows it is not in his bones.
So why did the doctors say it’s aggressive?
I guess I don’t understand how cancer operates.
How can it be aggressive if it hasn’t spread?
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.
I also had a couple of bad dreams last night. I always have to sit up with the lights on for a while afterward. 😟
Yes, dreams can seem so real at times.
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.
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.
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.
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.
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.
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.