topic Re: Caregivers in Wellness

Caregivers

Ditzydori — Mon, 24 Apr 2017 06:08:25 GMT

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.

Re: Caregivers

Kachina624 — Mon, 24 Apr 2017 06:54:23 GMT

@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.

Re: Caregivers

Big Sister — Mon, 24 Apr 2017 07:26:50 GMT

@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.

Re: Caregivers

gracie2014 — Mon, 24 Apr 2017 08:21:40 GMT

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!

Re: Caregivers

meallen616 — Mon, 24 Apr 2017 11:01:13 GMT

Re: Caregivers

gmkb — Mon, 24 Apr 2017 11:58:41 GMT

@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.

Re: Caregivers

panda1234 — Mon, 24 Apr 2017 12:12:38 GMT

@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.

Re: Caregivers

SXMGirl — Mon, 24 Apr 2017 12:48:20 GMT

@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.

Re: Caregivers

LonestarBabs — Mon, 24 Apr 2017 12:53:55 GMT

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.

Re: Caregivers

NicksmomESQ — Mon, 24 Apr 2017 13:05:12 GMT

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!!

Re: Caregivers

rrpell — Mon, 24 Apr 2017 13:50:10 GMT

@Ditzydori

Me, I'm a caregiver I have taken care of my father for two years.

If you could see my face, right now, I'm giving you a big smile

If you were here, I would give you a big hug and tell you how, by just considering to do this, makes you a very special, wonderful a person. I would come to your home, bring you dinners for you to stick in your freezer for the "guests", make you a cup of tea and serve it with the biggest cookie, rub your shoulders and... we would share.

The smothering weight of an all encompassing responsibility is on us. In addition, someone we love is ailing.

What keeps me going is I try to live by the golden rule. This helps me keep focused.

I have access to a social worker, through the VA, who is assigned to my father. When he comes to visit, I talk with him and I feel better. I feel he validates my feelings and recharges me. I would encourage you to connect with a professional so your feelings don't get bottled up inside you. They can guide you.

Do you live near a hospital? When my husband was going through prostate cancer, I attended the support group at our local hospital. There, I learned information and references. People who are going through the same things can be your best friends. Try to make those meetings as they will be worth the time.

I also like cooking and I lose myself in the kitchen. I can forget everything else in my world when I am experimenting with a new recipe!

I'm thinking of you.. you are not alone

Re: Caregivers

software — Mon, 24 Apr 2017 15:15:18 GMT

I'm so sorry.

Been there, done that.

Don't do this alone. Make sure all his friends know, you would be surprised how supportive other men can be.
Ask for help, talk to the social worker at your health care facility.

Bless you both.

@Ditzydori

Re: Caregivers

Mistreatedbycs — Mon, 24 Apr 2017 15:35:48 GMT

I was for my mom, and she has passed. Yes, you are tired but there are special people who are chosen to do this and think of yourself as one of them. Not everyone is good at it.

If I could go back and do it again, I would, the time spent with my mom can never be relived, I miss her so much.

Take the time you have and cherish every minute, yes, it's tiring and it is also thankless but be grateful that you are there and never forget it.

Re: Caregivers

dex — Mon, 24 Apr 2017 17:01:21 GMT

@rrpell You have a beautiful spirit.I learned a new outlook about one of my biggest worries from your post...thanks for being here.

Re: Caregivers

RedTop — Mon, 24 Apr 2017 18:05:16 GMT

@Ditzydori,

Sending prayers your way for the mental and physical strength you need to be the support your husband needs. I watched my mother care for my dad, and I left my job 4 years ago to be caretaker for my husband, and my mother.

My loved ones are still mobile and physically capable of doing things for themselves, although it's clear changes are coming. My husband still drives locally, mom gave up driving 5+ years ago. Right now my load is more mental with keeping up with their needs, all medical appointments, medications, and my husbands medical equipment. Within the last 2 weeks we have made 3 trips to the VA, which is an hours drive to, and from, our house. I even had to reschedule my knee surgery due to unforeseen circumstances.

My suggestion is to stop trying to do everything; let people see, and know you need help. When people come to visit and see everything neat, clean and orderly, they think you have it all under control. Reach out to your family, friends, church family, and any agency for the help you need. Get someone to mow your grass, ask someone to come over and sit with your husband while you run to the grocery store. Stop trying to be a good hostess for visiting family; give them the reality check they need to see what's really going on, and be of help to you.

Be sure those closest to you understand that your husband has a terminal condition. Spend time with your husband; say anything you need to say, laugh, reflect, and enjoy special moments. Make sure you look back on this time and have no regrets; no I could've, should've, would've moments.

Hugs and best wishes to you, your husband, and your family.

Re: Caregivers

gidgetgh — Mon, 24 Apr 2017 18:15:20 GMT

@Ditzydori- I don't have anything really profound to tell you, but I wanted you to know that I'm thinking about you and your husband and I'm just really sorry that you have these "challenges" right now.

My husband has Parkinson's and had colon cancer 2 years ago. Getting through the cancer was difficult. Hospital every day for 12 hours or so, surgery, rehab for a few weeks. Being the caregiver is exhausting, both physically and mentally and scary because the unknown of what might or might not come.

Just do your best- that's all you can do. And take each day as it comes. I don't look beyond today and that helps me.

Take care.

Re: Caregivers

Ditzydori — Mon, 24 Apr 2017 19:56:41 GMT

Thanks so much for your encouraging words. This all happened so fast. I'm sort of in a whirl wind. The doctors have not said he's terminal. When I ask if he will get better they tell me it's a process. So I assume they think he will recover. Right now he is very weak, can't drive or even go out. And he is in pain, also. He has plenty of pain meds, but they make him even more tired.

The melanoma came back for a forth time in the same location. (Neck). They are not recommending surgery at this time because he has had so much surgery already in that area to remove the cancer. He had 5 rounds of cyberknife radiation instead. His scan is on Wednesday and next week we'll get the results. Then we'll go from there.

It also has spread to his lung, and he received radiation for that as well. He currently also has prostrate cancer, and is being treated with Luvox (hormone therapy) to "keep that cancer quiet". He has had colon cancer as well. All three different cancers, but the melanoma is the one that keeps spreading. He's on a second immunotherapy for the melanoma. The first one (Keytruda) didn't do anything. It still came back.

He has a large bump in his neck. The original melanoma was discovered when he went to the doctor for something else. The dr didn't like the way a beauty mark on his jaw looked. One he had all his life. It was biopsy and bam!!

He is diabetic and his sugars have soared. So now he's on insulin. He's extremely anemic. He received procrit and an iron infusion. They checked his stool for blood, but waiting for the results on that as well.

There's more but I would have to write a book so I'll just stop here. Lol.

If things don't improve within the next few months, I certainly will have to start making the changes you all suggest. We'll see which way theses treatments go.

I, too, had to postpone my knee surgery, REDTOP.

Thanks for the website, and all the suggestions. Also for all the very kind words. I really appreciate it so very much.

Re: Caregivers

catwhisperer — Mon, 24 Apr 2017 21:04:38 GMT

@Ditzydori....I am so very sorry. I have been a full time caregiver for my DH for six months now. Yes, it is exhausting. No help from any friends or family. I have dealt with social workers, nurses, doctors, and caregiver respite agencies galore.

I agree with what some of the other posters said, take one day at a time. It's real easy to think ahead too much and get overwhelmed. (((Hugs))).

Re: Caregivers

SaRina — Mon, 24 Apr 2017 21:39:47 GMT

I'm sorry you are dealing with this. Being a caregiver is physically, emotionally, and psychologically exhausting. My experience with caregiving came on suddenly and it was unlike any other challenge I have ever had to face in my life.

First and foremost, do NOT entertain or otherwise put yourself out in any way for other family members. They should be putting themselves out to help you. They need to understand that they must fend for themselves and not expect you to serve them.

There are lots of very good articles on-line about the challenges that caregivers face, also specific forums in which to share. Try to find a local support group -- call your local Department of the Aging for this information.

Take care of yourself as best as you can, and when you are feeling particularly down or hopeless, remember you are doing the best you can. It is a labor of love.

Re: Caregivers

Big Sister — Tue, 25 Apr 2017 00:52:48 GMT

I am back with another suggestion: every day, find something to smile or laugh about. I thought I had lost my sense of humor while I was a caregiver, but the first time I laughed while out with friends, I realized, "hey, I still have my humor."

That was important for me to know.