Caregivers

Ditzydori · ‎03-10-2010

I never expected this to happen. My DH is battling stage 4 melanoma. But he really was basically ok in that he was always able to everything he always did. He cooked, planted his garden, drove all over, etc.

now, since February everything changed. He isn't able to do anything. The fatigue he is feeling is debilitating. He can't drive anymore, and stays home all day everyday, except for drs appointments.

he has multiple medical issues, besides the melanoma. At this point I'm not sure what's causing him to feel so badly, the cancer or his other issues. I'm not sure the dr knows either. They always say could be this, could be that, and getting well is a process.

So I have become his caregiver. And I never imagined this would happen. It's not easy being the caregiver. I do everything. I'm tired. When his family comes to see him it means dinner for them because they live far from us. Doing anything fun is a thing of the past. Each day I don't know what to expect. Everyone is concerned about DH but don't realize this is my struggle also.

My children aren't that close to help. I'm struggling with this new role. Is anyone else also a caregiver? Care to give me words of encouragement? I could sure use some.

Kachina624 · ‎03-10-2010

@Ditzydori I'm so sorry you have to go through this. I think you're long over-due for a talk with dh's doctor. He ought to know if treatment he's undergoing causes fatigue or is it something else. Depression perhaps?

You need to do everything in your power to make your life as easy and stress free as possible to include not cooking for visiting relatives. I'd give them a choice eating out Dutch or KFC at your place. You'll just have to explain that your physical resources are limited right now. If you don't speak up, they won't know. I can't believe they haven't suggested this already.

I'm sure many here will keep you in their thoughts. Keep us posted on how you're doing.

New Mexico☀️Land Of Enchantment

Big Sister · ‎05-15-2010

@Ditzydori You have one of the hardest jobs on earth: caregiver.

Before my DH died of complications from Alzheimer's Disease, I took care of him in our home for three years. I had help at times from some family, but once Hospice came aboard, there was more help. They were wonderful and I could get out of the house several times a week.

One thing I learned is not to worry about something that is a week away. Only deal with what is in front of you, because most likely what you were worried about won't happen for some reason or another or plans and expectations change.

If you don't want to leave him alone at home, can you get someone to stay in the house with DH while you are out? Maybe one of his men friends can come by once a week. You have to have time for yourself.

Years ago my DH did have Melanoma and had surgery on his face. Fortunately, he survived it very well.

When your DH has a dr's appointment, go with him and bring questions for the dr. to answer, and keep notes. You need to find out (if the dr. knows) if your DH is facing a terminal illness. If not, then I would assume he may improve.

Please keep me posted, and good luck to you.

gracie2014 · ‎02-02-2016

Your number one priority is you and your husband. I agree 100 % with @Kachina624. Talk to his doctor, there are different levels of hospice care.....you need back up. In terms of family or friends coming to visit it is not your responsibility to provide meals. As a matter of fact, they should be doing whatever possible to lighten your load...you have enough on your plate. Sending you cyber hugs and good thoughts!

meallen616 · ‎01-10-2013

gmkb · ‎07-29-2012

@Ditzydori I am not the caregiver, but the one being cared for by my husband. He would share your frustration, I am sure.

All the shared duties now become the caregiver's responsibility. He feels overwhelmed and I feel frustrated that I can do so little.

And you are correct; fun is a thing of the past.

Please know that as frustrating as this is for you, the caregiver, it is equally frustrating for the recipient. I hope he thanks you and expresses appreciation. My husband always says that knowing he is appreciated eases his burden.

Wishing you both better days ahead.

panda1234 · ‎04-27-2015

@gmkb wrote:
@Ditzydori I am not the caregiver, but the one being cared for by my husband. He would share your frustration, I am sure.
All the shared duties now become the caregiver's responsibility. He feels overwhelmed and I feel frustrated that I can do so little.
And you are correct; fun is a thing of the past.
Please know that as frustrating as this is for you, the caregiver, it is equally frustrating for the recipient. I hope he thanks you and expresses appreciation. My husband always says that knowing he is appreciated eases his burden.
Wishing you both better days ahead.

I am a caregiver and a little appreciation goes a long way.

SXMGirl · ‎07-07-2010

@Ditzydori, I am so sorry that you are going through this. My husband survived two forms of stage 4 cancer, so I understand.

First, you must take care of yourself. He will not need you every hour of the day, so take a walk, meet a friend for coffee or lunch, just do something for yourself every day if you can.

Second, when the family comes, assign them tasks. When my husband's family showed up to "help," their definition of help and mine were quite different. While they did not like having to do things, I always asked nicely if they would do this or that and they did it. Make it clear that help means just that. If they are coming for a visit, then make the expectations clear and let them know that you cannot do everything by yourself. Be emphatic if you must.

If he has a friend, maybe that friend could visit once a week. His energy level will definitely be better.

Also, talk to his oncologist. My husband's company also sent a visiting nurse, which was really wonderful. This also gave me time to do something for myself.

Please take care of yourself while you are taking care of your husband. He will definitely appreciate it.

The next time that I hear salt and ice together, it better be in a margarita!

LonestarBabs · ‎06-26-2011

I've been a caregiver to my elderly mother for the past two years. Wasn't my plan. I highly recommend Caregiving.com -- a community of support and resources to help us all make it through the daily, even hourly, challenges and deal with the effects on our lives. Helps you realize that what you are experiencing, feeling, thinking is not unusual. And it's ok to occasionally hate the situation - you are human, after all! Hang in there. You are not alone.

I also recommend getting some help - I finally got a cleaning service to come in every two weeks and alleviate the burden of housecleaning. Then, I worked with Home Instead Senior Care and have a caregiver come in a few afternoons a week so I can get out of the house. Oh, and grocery delivery. If that's available in your community take advantage of it! Do things to make your life as easy as possible - this will help you feel less stressed and overwhelmed at times.

NicksmomESQ · ‎08-19-2014

So sorry for you .People don't realize that the caregiver is affected too.The last thing you should be worrying about is cooking for visiting family or anybody else!! You should bring in fast food & or ask them to fend for themselves.Honestly, they should be bringing in food for you & DH. You also shouldn't worry about cleaning or laundry.Is there someone who could do it for you?It's worth it even if it cost a little bit.

Contact your local hospital. Sometimes they know of volunteers who they could put you in touch with. My girlfriend had success with doing that.She got a really nice man to help her care for her dad 3x a week for 3 hours a day.

Good luck to you!!