Caregivers need emotional support too

Posted by talkativeinfl @talkativeinfl, Jun 5, 2023

As a caregiver to my husband who was diagnosed with PNet in September of 22 and found out that he has had it since 2014 undiagnosed until September when they removed a benign mass from his colon but found suspicious spots on his abdominal wall.

When he was 1st diagnosed (before the oncologist got all his records and found out how long he had actually had this cancer) his oncologist said that this was a slow growing cancer and my husband would have between 2 to 5 yrs. Well at age 75 we were ok with that. Fast forward to about a month and a half later and they did a galiaum scan and got his medical records from baptist downtown NOW they have the full picture.

I asked the oncologist "now that you have the full picture of the cancer history and progression, what is your prognosis" he looked at me odd. I said well you did say 2 to 5 yrs when we first met with you, now that you know its stage 4 whats the prognosis,(I wanted to prepare both my husband and I), The doctor replied " I dont like to assign numbers, it can hurt the patients outcome or give them false hope"! I was thinking, you were quick to throw out numbers before you knew the full story.

I am still working and dealing with a back injury and fighting workers comp and all the bills this disease brings. I feel horrible because I cant be home with him as I watch him slip further and further away from me. My shift leaves me about 2 hrs before work (if he is awake) and about 2 to 3 hrs after before we both go to bed but he his usually dosing in his chair so not so much quality time.

I had to tell him that we could not afford to rent a convertible he wanted to rent to take day trips, when I take off next month for a week because of all the bills. NOW I feel like I just took away the last thing he really wanted to do. How do I deny him that even if its at my own peril.

I no longer spend time doing things I love well we both love because I am just bone tired and so is he usually. He can not take too much cold and I cant take heat due to my heart so it leaves very little common ground since anything below 82 seems to make him cold nowdays.

Having someone who truly understands without feeling like I want something from them other then someone to talk to is non existant. Most of our "friends" have disappeared, no calls, texts etc

I cant really talk about things with my husband because it worries him or upsets him when he is altered so I just hide away and cry but put on a game face for everyone else. Who do caregivers have to help us??

To anyone who met my husband today you wouldnt think he was in too bad of shape but if you REALLY know him, you see it. Even our new doc who has only seen him about 3 times noticed his altered state and will be testing him next month at his next visit. Its subtle changes in his moods and behavior or his ability to recall things or even do simple tasks that were once his strong suit like math in the check book. I started to get concerned about this when he messed up the checking account 2 months in a row (totally out of character) but when the 3rd month left him confused about how to fix his mistake even though I was using the simplest explanation possible that I realized the cancer may have now spread to his brain too. It started in his pancreas but went undiagnosed at that time when he had a mass removed along with his spleen. Now it is in his liver with "too numerous to count tumors" and on his abdominal wall where it was 1st detected. UGH

CANCER SUCKS

Interested in more discussions like this? Go to the Caregivers Support Group.

@talkativeinfl You are so right! Caregivers need emotional support, too! Have any of your doctors mentioned it to you? There s usually a social worker in each office that you can make an appointment with. Also, ask the doctor to refer your husband to palliative care or hospice care. Hospice has doctors, educated nurses, aides, social workers who provide all the physical care for the patient and emotional support to the family. Hospice has a team approach. I experience hospice with both of my parents and was very pleased.
Do you thing something like this would be helpful for you?

REPLY
@becsbuddy

@talkativeinfl You are so right! Caregivers need emotional support, too! Have any of your doctors mentioned it to you? There s usually a social worker in each office that you can make an appointment with. Also, ask the doctor to refer your husband to palliative care or hospice care. Hospice has doctors, educated nurses, aides, social workers who provide all the physical care for the patient and emotional support to the family. Hospice has a team approach. I experience hospice with both of my parents and was very pleased.
Do you thing something like this would be helpful for you?

Jump to this post

I have been thinking about that for a while and broached the subject with my husband once giving him all the benefits of having hospice come in early so that we can establish a trusted group but he dug his heels in saying he was not about to have a stranger come to check on him even if it was only once a month until it was ABSOLUTELY NECESSARY. It has to be in his time and his decision as it has been for our whole marriage. I have to suggest things and let them drop so he can think about them and come up with the idea. I just FINALLY got him to decide he needed to look at the will, power of attorney and living will 3 month or so after we had them done online so that we can get them witnessed and notarized. Its got to be in his time for everything so I tend to believe him when he says I need to save my vacation time for his time. I told him he wasnt going anywhere this year and he said "yes I am love, yes I am".

REPLY
@talkativeinfl

I have been thinking about that for a while and broached the subject with my husband once giving him all the benefits of having hospice come in early so that we can establish a trusted group but he dug his heels in saying he was not about to have a stranger come to check on him even if it was only once a month until it was ABSOLUTELY NECESSARY. It has to be in his time and his decision as it has been for our whole marriage. I have to suggest things and let them drop so he can think about them and come up with the idea. I just FINALLY got him to decide he needed to look at the will, power of attorney and living will 3 month or so after we had them done online so that we can get them witnessed and notarized. Its got to be in his time for everything so I tend to believe him when he says I need to save my vacation time for his time. I told him he wasnt going anywhere this year and he said "yes I am love, yes I am".

Jump to this post

Good morning, @talkativeinfl I'm not sure of the rules in your state, but here in mine, my wife needed a doctor's prescription to gain hospice services. It was a blessing for us to have him, her trusted doctor, be the one who told her it was time.

Just a thought from Indiana 🙂

Strength, Courage, & Peace

REPLY

I’d like to comment since I gather that your husband does not want hospic right now. My mom did not either. She also did not want the help of a social worker, but I needed it. I found assistance in the hospital when Mom was there and through her palliative care at home (which was not hospice even though it sounds similar). Inwoild also check with local council on aging for advice. I bet the know hood resources that are free

REPLY
@talkativeinfl

I have been thinking about that for a while and broached the subject with my husband once giving him all the benefits of having hospice come in early so that we can establish a trusted group but he dug his heels in saying he was not about to have a stranger come to check on him even if it was only once a month until it was ABSOLUTELY NECESSARY. It has to be in his time and his decision as it has been for our whole marriage. I have to suggest things and let them drop so he can think about them and come up with the idea. I just FINALLY got him to decide he needed to look at the will, power of attorney and living will 3 month or so after we had them done online so that we can get them witnessed and notarized. Its got to be in his time for everything so I tend to believe him when he says I need to save my vacation time for his time. I told him he wasnt going anywhere this year and he said "yes I am love, yes I am".

Jump to this post

I'm glad you're here on this site. The things you're talking about are so incredibly familiar to me and to many (or all?) of us here. This is a good place to come to talk and want nothing from other people but their emotional support. You have mine if you want it.
On a practical side, when my mother was dying and wouldn't accept hospice, I finally had to tell her that I couldn't physically care for her alone any longer. She accepted that and hospice came in to help. Those people are wonderful.
I also understand how you don't want to tell your husband any of your feelings because of how it upsets him. I have the same thing with my husband who is losing his memory and his ability to manage small things like the checkbook, etc. We walk a fine line. Good luck, and I hope you get some rest.

REPLY

Hang in there. Life is hard sometimes. I know I actually just have to pray and put it in God’s hands. I am sure you are doing your very best and you know your spouse better than anyone.🙏 God Bless both of you.

REPLY

Hello, I can feel, understand and relate as l am my husband's (advanced metastatic prostate cancer) sole caregiver too. I am retired so at least l am home with him. We have neither family nor friends nor kind neighbors who'll give a hand with anything. It's just me. Several people promised the world but we never heard back from them. I wish someone would just call and say "put the coffee on, l'm coming over with some muffins" or whatever but it's ZILCH, ZERO, NADA, NIENTE😬

REPLY
@bigmaya

Hello, I can feel, understand and relate as l am my husband's (advanced metastatic prostate cancer) sole caregiver too. I am retired so at least l am home with him. We have neither family nor friends nor kind neighbors who'll give a hand with anything. It's just me. Several people promised the world but we never heard back from them. I wish someone would just call and say "put the coffee on, l'm coming over with some muffins" or whatever but it's ZILCH, ZERO, NADA, NIENTE😬

Jump to this post

I’m managing through the early stages of dementia with my husband. He’s a progressively worsening handful. I think I know how you must be feeling. I keep saying I could use ten good people to help out around the house but no one shows up here either. I’m so sorry you are feeling alone. If we were neighbors, I’d be right over with a fresh baked banana bread. Hope this message gives you some uplifting. Breathe for a moment, take an Epsom salt bath with lavender and try to go to bed early. Crack a window at night and listen to the rain or the night birds. This will bring you some peace.

REPLY
@becsbuddy

@talkativeinfl You are so right! Caregivers need emotional support, too! Have any of your doctors mentioned it to you? There s usually a social worker in each office that you can make an appointment with. Also, ask the doctor to refer your husband to palliative care or hospice care. Hospice has doctors, educated nurses, aides, social workers who provide all the physical care for the patient and emotional support to the family. Hospice has a team approach. I experience hospice with both of my parents and was very pleased.
Do you thing something like this would be helpful for you?

Jump to this post

Our doctor never offered any help - no social worker, no information on how much my husbands meds would cost ($14,000 a month) and not even a word about getting a grant to cover the cost of the pills. He only said if you don’t take these pills & shot you’ll be dead in 6 months with bone cancer and it will be a horrible death! I’m so over trying to find help and information. We’re both tired and the side effects of the meds is overwhelming to him. I’ve contacted the drug company and all they are concerned with is that they need to report it to the FDA! My husband is 75 with stage 4 prostate cancer.

REPLY
@clkurth

I’m managing through the early stages of dementia with my husband. He’s a progressively worsening handful. I think I know how you must be feeling. I keep saying I could use ten good people to help out around the house but no one shows up here either. I’m so sorry you are feeling alone. If we were neighbors, I’d be right over with a fresh baked banana bread. Hope this message gives you some uplifting. Breathe for a moment, take an Epsom salt bath with lavender and try to go to bed early. Crack a window at night and listen to the rain or the night birds. This will bring you some peace.

Jump to this post

I am right there with you both with my husband still in MCI stage of Alzheimer’s - but progressing.
I think that is what I would find to be the most help right now is just having an ongoing relationship (chat/walk/email exchange) with someone else who is going through the same thing and with little family support.
If you live close by, I’ll put the coffee on

REPLY
Please sign in or register to post a reply.