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.
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?
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.
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 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".
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.
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 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.
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.
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?
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.
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/*
Eeeek, Martz, what a lot of confusion over the medications. You know, not a whole lot you can do about it, as it is basically the aging process, and some loss of mentation. Sure enough all that is an exercise in "not everything can be fixed".
On sunday sis fell for the 3 time.-chair alarm went off-by the time aid got to the room sis was on the floor on her back. Big red bleeding abrasion on the back of her head. They call me and suggest she go to the ER. I say yes definitely. 6 hours later-no injuries on Xray etc. but urine shows UTI. sis looked bad to me-flushed face, crying about every 5 mins-anyone who has had a UTI knows it hurts A LOT!!!! Sis drank 2 large cups of water and a protein shake I brought along-knowing we would be in the ER for a while. Sis has been loosing weight at the current place 20 pounds and counting in spite of them telling me she is offered protein supplement 4 times a day. Now see a med ordered for a yeast infection on top of the UTI. Blood pressure increasing for sis now needs 2 BP meds. Also been treated for scabies again-no one knew what it was and due to covid could not get sis into dermatology office until months later when they said yes this is scabies......ER day sis is in her PJ at 4 pm arrival to hospital. Later i ask staff why was she not in clothes today.....Staff says it was the weekend we do not "make" residents get dressed. Sis on 4 anti psychotic drugs due to all the crying-i believe is related to the horrible rash that went on for months. I could not take sis out and i tried to get an earlier appointment but not available either. I mention to DON when the skin is clear-which is now-can we please discuss cutting down on psych drugs. She says why the drugs are working...... NO the skin is better-staff is telling sis is doing much better now and no crying. I spend hours most days i call to check in trying to get someone to answer the phone-the system does not let you leave a message-i am not calling at meal time or bed time. They are keeping patients in their rooms due to staff covid cases, there have not been any activities for months. I was told the psych dr. had done an eval and wanted to up her meds. I called psych dr. and was told no he has not visited in several months-he did not do the eval.......I no longer have a good feeling about this place. I considered bringing sis home-it is not a long term solution. sis needs 24 hour care. My parents receive only average care-loads of unconcerned CG turn up every week and do as little as possible to be helpful. Finding good reliable support for home care is nearly impossible in my opinion. I am one person I can not do the work of 4-5 people every day all day.
I am so sorry your pooch has lymphoma.
My vet kept telling me that it was time and not to allow him to suffer. I took comfort in not wanting to see him suffer but it’s still very hard.
We grieve for them and miss them greatly.
Her actions make me so irritated. She wants to go with me everywhere!! I feel like I’m suffocating sometimes. I need my space. I came to live with her after my beloved husband passed two years ago. Happy & content for 40 years was how I lived. Now I’m back - I guess to work out the past? - living with an older, more irritating mother than when I left. I love her, but it’s her behavior that makes me occasionally get angry. So, it does make me feel better knowing there are other caregivers experiencing similar behavior from their aging parents too.