spouses.. how do you handle it?

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Hello everyone. I'm new

Hello everyone. I'm new around here although I have been a caregiver to my wife for 4 years now (stage 4 cancer) and I think I have felt every emotion and had every thought that has been expressed in this thread. More and more often I find myself thinking how much better it would be for both of us if the cancer would just win. Of course, I then feel guilty for having those thoughts. Folks tell me how strong I am and how devoted I am and so on. They don't ever seem to understand how tired I am of it all, how lonely I feel all the time now, and that I do NOT want to talk to them about my wife, her cancer, or taking care of her. But that is all anyone wants to talk about. My employer lets me work from home. I go into the office when I can, but it is rare. Of course, that is a big help in many ways, but it just adds to the isolation. I, too, am doing this single-handedly. Our family is far away and friends don't come around much any more. Can't say as I blame them. We, especially I, am not much fun to be around any more. No more hobbies. Little conversation. No personal relationship with my wife. No life but work at work and work at home.

My husband was diagnosed with

My husband was diagnosed with early stage alzheimers and early stage parkinsons. He is aware of what is going on some of the time but he refuses to bathe or do any of the things the doctors tell himi. He can hardly get around because all he does is sit in front of the TV all day. He refuses to go for a walk or to a senior center and he refuses to bathe. I am beside myself as we cannot go anywhere when he is dirty and stinks. I don't know what to do, I cannot physically overpower him and make him do things and when I ask him he tells me I am not his boss. Any suggestions greatly appreciated.

To DebR ~ My husband has ALS

To DebR ~ My husband has ALS and I am his only caretaker. He was diagnosed September 2012, drove until June of 2013 and now he can no longer walk and his arms and hands are useless. ALS is quick and he is now 42. I have used Gold Bond body powder triple action relief in the yellow bottle on him and it takes away the itch and the stink. Better than nothing and at this point I would tell you not to force your husband to do anything he doesn't want to right now. He has to adjust to the situation and everyone handles things differently. My husband is stubborn and I have had to just wait until he was ready for each step. I hope this helps! And good luck, it's not easy, rewarding, fun, or anything else. It is straight self sacrifice.

Goodness knows I needed to

Goodness knows I needed to read the above entries today. I care for my husband who has been disabled for the last year and a half. He suffers greatly every day, his journey started with a supposed hernia, that incidentally was a large tumor growth.
Within three weeks of torture waiting we were told his tumor growths while not cancerous are life threatening and they gave us three months to get our affairs in order.
We found he had tumors throughout his stomach, around his groin, and choking his spinal cord. 2/3 of his spinal cavity filled and nerve damage causing him to no longer be able to walk, or eat, they scheduled a series of surgeries to inspect the masses in his stomach and spine as a last ditch effort to stave off the rapid growth.
My husband of now four years has been the main provider for our family, I was taking Care of my disabled grandparents- I was already stretched thin as a care giver and the day they told us of the exponential growth near his brain and that it was inoperable my grandmother passed away. I had started working a month prior to this event in our life after taking a year off after suffering a miscarriage that nearly cost me my life.
I have spent hours pouring over an extreme budget to keep us out of debt from mounting bills while sorting through the life my grandparents left behind my mother shuffling the burden to me as she couldn't handle the stress of that while grieving her mother. She slapped me disrupting her grief with my problems, my tears that I was an ungrateful child.
I waited in survery for my husband for eight hours, he was never guaranteed to come out alive and went directly to icu for internal bleeding and complications- his mother let me know that evening by phone that they could not handle seeing him this way and have disowned us.

I'm utterly spent- we have worked so hard to now be able to look back and have beaten the odds this long. Only for my husband to sink into despair and lose any desire to live. I'm drowning.

Neen
Neen's picture
SO sorry!

God Bless u Hun.   Wow I am praying for you to be comforted. Keep up the great work. I thought I had it bad w my paralyzed husband. Try to reach out for a sitter, go for a cup of coffee try to take tiny pleasures.On the other hand I have thought of a wiffle ball bat once or twice... ;) joking ofcourse but if we dont laugh....

KarenS
KarenS's picture
What's the definition of marriage...

So what is the definition of marriage.  When I hear the word, I don't feel it...  not anymore.  It's more like a roommate.  I hear the word love a lot, but there are many kinds of love.  Sometimes, along with the illness comes the feeling love too has faded.  It may be easier to handle if ones spouse talked, and listened. 

This article isn't really what we feel, but I read "What It Feels Like to be in a Sexless Marriage" and some of it does feel that way.

http://www.huffingtonpost.com/divorced-moms/sexless-marriage-when-a-m_b_6610402.html

 

Smedley_Butler
Hi Karen.

Hi Karen.

This is the 2nd post of yours I have read tonight that I immediately connected with.  I am in the same boat.  Love for me, now, means unending work and exhaustion.  I make commitements and stick to them, but I am reaching the end of my rope and when this is all over, all I want to do is become a hermit until my time finally, blessedly, comes.  I fell guilty as hell about it, but, God help me, deep down I just want all this to be over.

KarenS
KarenS's picture
You shouldn't feel guilty...

You shouldn't feel guilty.  As they say "Life is for the living".  It's unfortunate that some ill people stop living to their full capacity.  I'm lucky in the respect that financially I don't have to worry.  Some have that worry to contend with too.  I get guilt from that..  having a nice home, trips, ability of quiting my job, good food, vacations...  yet still VERY unhappy.  That feeling of no intimacy, and want sucks the joy right out of you.  I hear that you should live in the moment, which I keep trying to do, but still can't get back my smile. 

Don't work yourself to a pulp.  There must be more to life.  I haven't made many friends here, most of them are in my home-state.  No family here either.  It can be very lonely.  I won't know what to do if it weren't for my dog.  She gives me inconditional love.  My husband is in bed for most of the week following his chemo which he gets every 3 weeks.  I feel lethargic jsut sitting around with him. 

Yes, I too have been called a strong woman...  which honestly I hate to hear.  I don't want to be strong....  I'm tired of strong.  I want the happy, smily, sweet, carefree woman that has a dance in her step back.  You do get it back..  but it comes in time after they're gone.  See I've been through this, so I know the story.  The endings not a happily-ever-after, but later the smiles do return.  For me it's like a bad relived dream... that I too wish would end.  It will in time, and I know we don't want that...  we just want some happiness and joy.  Just too bad it can't be how you want it. 

Guess we have to take what we're dealt with..  do the best we can, and try to get through it. 

 

Smedley_Butler
Thanks, Karen.  Your words

Thanks, Karen.  Your words have helped me more than any others I've heard in a long time.  You give me hope that I will make through all this and what is yet to come and have something of a life when I come out the other side.

Hang in there and I will do the same.

KarenS
KarenS's picture
Hanging in there is all we can do.....

Hanging in there is all we can do.  It may get worse before it gets better, but we have absolutely no control over it.  You have control only of yourself.  We can take this in a down way, or do the best to keep somewhat upbeat.  Keep forcing that smile on your face... one day it will come back automatically.  Well, at least that's my hope for us all. 

Today I'm looking at azcentral to find something to do.  It's hotter than heck here in Arizona, but no complaints...  it beats the cold snowy winters of Chicago.  Indoor activities...  a theatre play, or indoor baseball game haha.  The snowbirds are gone, so are outdoor events unless you do a roadtrip up north where it's a bit cooler.  We'll see what I can find. 

You do the same...  find something nice to do for yourself. 

 

KarenS
KarenS's picture
So much for getting out...

So much for getting out today.  Not meant to be I guess.  Hopefully the rest of you weren't housebound, and had a nice weekend out. 

KarenS
KarenS's picture
SOME GOOD WEBSITES.... What About Sex...Who Helps the Caregiver

Here's some good websites with info on "What about sex", "Who helps the caregivers" and "When caregivers care too much".  I'm going to the bookstore today, and will look into the books "Caregiving Wife's handbook" and "Who Helps the Caregivers"...  along with any others that may be good reading. 

https://www.psychologytoday.com/blog/the-caregivers-handbook/201304/what-about-sex

https://www.psychologytoday.com/blog/the-caregivers-handbook/201302/who-helps-the-caregivers

 https://www.psychologytoday.com/blog/the-caregivers-handbook/201208/when-caregivers-care-too-much

KarenS
KarenS's picture
A book for spouse caregivers...

I just ordered this book, which seems like it might be good info for husband or wife caregivers.  I'll let you know once Barnes and Nobles gets it in for me to read.  Below is the book overview.

The Caregiving Wife's Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself by Diana B. Denholm

Overview

A month after proposing marriage, Diana Denholm's husband was diagnosed with colon cancer and later congestive heart failure. Following a heart transplant several of her husband's body systems began failing forcing Diana to become his primary caregiver for more than a decade. The Caregiving Wife's Handbook is a step-by-step communication guide to help women maintain emotional, physical and financial health in their unique role as caregivers to their dying husbands.

Women are suffering physical, emotional and financial burnout as the United States' leading caregivers. Of the 65 million caregivers in the U.S., 66% are women, and these numbers will only increase as the population ages. And while statistics and resources abound for caregivers in general, very little exists for women in their unique role as caregivers to their dying husbands.

Traditionally, caring for a dying husband has been seen as a "wifely duty." Most wives don’t label themselves, and aren’t labeled by others, as caregivers. But advances in medical technology are making this distinction an imperitive since women are under more stress as caregivers than at any other time in history. Although there are generic similarities in caretaking, caregiving for a dying husband is distinctly different, and the longer the dying process, the more complex the problems.

When a husband is in the process of dying for many months or years the experience is quite different than a husband's sudden death. On top of dealing with the tragedy, the wife must figure out how to make life work. Sometimes a woman is married to the love of her life and sometimes not. Some marriages strengthen, while others disintegrate. Some women are in abusive relationships and find the abuse continues, and even increases, during these times, while others find, much to their surprise, that they become the abusers. Still some will start or increase substance abuse and others will have affairs to get by.

The Caregiving Wife's Handbook aims to help women get through their husbands' illness and death with compassion, emotionally whole and without regret by helping them communicate clearly—and in steps—about issues affecting this unique caregiving relationship.

Without specific direction, many women find themselves over the top with stress as their lives change radically. As a board certified medical psychotherapist and primary caregiver, Diana Denholm recognized the need for a step-by-step process to help women communicate with their husbands to avoid irreparable damage and regret.

In The Caregiving Wife's Handbook, you will learn:

To ask questions you may not realize you need to ask

The issues that bother you and a method for categorizing them

What you should and shouldn't discuss with your husband

How to make and prepare for a date to talk about difficult topics

What to do if your husband won't talk

To create "understandings" with your husband

How to deal with his family

You will also learn survival tips from the case histories of Joyce, Fran, Tina, Jean, Susan, and Mary. Their experiences will help you:

Choose roles you should take and those you should avoid

Understand what is “normal” in what you’re experiencing and feeling

Take care of yourself so you can survive and even have fun

Implement do’s and avoid don’ts to make your life simpler

Balance with greater ease

Other topics addressed are:

Sex life/intimacy

Current and future finances

Fatigue

Sleep

Household duties

Job responsibilities

Irresponsible behaviors

Unrealistic expectations...

The challenges of this time are endless and extreme and the reality often isn’t the beautiful and revered journey often portrayed. When a husband is dying of a long-term illness, the gift of time can allow us to prepare and say all the loving things we need to say, but it can also provide a lot of time for severe stressors and problems to develop. These problems and stressors can be debilitating for the caregiver and provide too many opportunities to say and do things we might regret. The Caregiving Wife's Handbook will give you the tools and support needed to get through your husbands' illness and death with compassion, emotionally whole and without regret.

Let The Caregiving Wife's Handbook support you amidst the grief—all the way through the Final Chapter.

 

 

TrueLove
Glad you all are here:-)

 

Hello There Caregivers, I  found this forum today and i just wanted to say hello and that I'm glad you are all here partaking in this. My beloved spouse/husband has Alzheimers and cancer. I must say, It has already lifted my heart a little coming accross your online support. I too can feel pretty lonely at times in this new role of spousal caregiver. I actually was having a pretty tough day when I found this site. I was feeling overwhelmed w caregiver issues as well as other life issues, one of which is that we Just moved and our home is still in total disarray. It seems with everything going on and some of my own health issues i just dont seem to b able to get things organized as easily as i used to and that drives me bonkers. Even though my husbands Dementia is the hardest challenge Ive ever faced, I do KNOW, with all my heart, that taking care of him is a blessing for me as well. However, many many days I have to repeatedly tell myself....I CAN do this.....but only if I only take it one day at a time, or somedays, even just a mere moment at a time. Btw, I too miss my husband the way he was before the dementia became debilitating. God i miss him so very very much! As many of u know or have said, the relationship does take such a dramatic turn. A turn from spousal partner, confidant, friend and lover, to now..... where we are most of the time virtually in a parental role with them. Whew.... No school for this life change is there? Thanks to all of you for your sharing; whether its to reach out For support or to reach out to Give support. It ALL has the potential to help one another. I know there are somedays i just need to hear another soul admit that they too struggle with feeling somewhat inept to carry this gauntlet of caregiver and yet other days, I seek and need words of encouragement. So thanks to u all for All u share... And for simply being here. 

Kindest Regards:-)

 

 

Allez
Adapting

As long as someone you love is alive, you can always say sweet things to each other that will melt your heart. You can always kiss them or lay your hand on them in a loving rest, or pat. This will keep the connectedness alive and make everything easier.

As far as the having a partner in the sense of all the other ways we were used to, you will have to adapt: maybe keeping yourself in practice all by yourself so you don't lose the physical abilities.  ha ha I thought about hiring a professional sex therapist or something at one time. But as long as you don't let your body completely go without, you'll make it through.  As far as having fun and someone to share things with, you'll have to let friends be that part of your life for now. So force yourself to get out there and go to church or volunteer somewhere where you can be part of a community that keeps you alive but also accepts whatever amount of time you able to give.  I don't believe in giving up my whole life to be of service to my spouse's.  I believe God has given me the tools to be able to serve the love of my life while also keeping my gift from Him (Life and this body) going in a way that is strong, robust and vibrant.  I believe there is a way. All I have to do is find it. Maybe I'll have to search in different places as I go, but I believe I can and in the searching I will learn of all God's gifts that I would otherwise never have had to develop or use.     Good luck to you!  God bless all of us!  I am very thankful that We are in this together. Allez

 

 

Finn
Stem Cell Transplant?

I am responding to the message below. I just joined thios site after reading your post. My wife is very near getting a stem cell transplant. We are worried about graft vs host disease and other horrors. If she doesn't get the transplant, she will die. Would you and husband do the transplant again if you were able?

Finn

Relationship with Spouse

nan, I can relate to your post, and I am so sorry you are going through this. I've been my husband's caregiver for  5 years. He's had two stem cell transplants, suffers from chronic graft versus host disease, neuropathy, recently had shingles and now has pneumonia. I don't know how much longer I can stand this. We live on an acreage in the woods so unless I actively seek out someone to be with it's just the two of us day after day. There are plenty of people I could socialize with but often I don't have the energy to get out. Is this my life now? I'm 61 and feel like I will never have fun again and that my life is over. Then I feel guilty for feeling this way. 

strugglingbutstrong
Finn

Hi Finn

Sorry that you and your wife are facing this. My husband had a bmt in 2007. He still has issues with GVHD and is still on a bunch of meds. You asked a member if they would do it over again. From my perspective, I wish that he could have had a natural approach to healing. All of these meds he is on has caused other problems like high bp, diabetes, mood swings, etc. and always lurking is the fine print of how the meds can cause secondary cancer down the line.. I am thankful that he is here and in many ways has gotten better than he was...at one point, I didn't think he was going to make it.  But being sick for so long, he is bitter and angry, depressed and has alot of self pity and it's emotionally draining to deal with.

There really is nothing that can prepare you for what chronic illness will bring. You never know what will happen with the illness and within your lives. It has  way of changing you and your loved one to a person that you sometimes don't recognize and would prefer to not have met. Then other days, you see a glimpse of who you and they were and it gives you a bit of hope... I think the most difficult thing to deal with is the negative emotions like anger, bitterness and overwhelming guilt for feeling them. They can eat at your core and make you question your quality as a human being.

For many years, I negelected to take care of myself as most caregivers do. Probem is that how you treat yourself is how the world will treat you. I behaved as if I were invisible and so now, it seems that way in my marriage. My needs are not as imporatant because I am the 'healthy one'. He never says this in words, but actions speak louder. I have taken on the role to the point where I felt like his illness was mine and became angry when he wouldn't listen to my suggestions when I could clearly see some things he is doing is harmful to himself and has a negative effect on our family.  I am now coming out of my dark place and found some peace in yoga, taking time to care for my body, mind and spirit. I see how my over caring has caused him to feel less responsible for himself and allowing most things to fall on me. I am learning how to back off and express to him that he needs to do what he can. He is in a depression, never accepting that he physically can't do some of the things he used to. He has been abandoned by friends of 20+ years in a harsh and cruel way so that adds to him feeling depressed.

Had he not had the transplant, it's likely he would have passed on many years ago. We are hopeful that things will improve (if the meds don't destroy him first). We have learned alot in this process and for me, I am thankful he is still here. I am sure he feels the same as he would have not seen our children grow up and would not have known our youngest at all who is now 10, and has had the opportunity to make a lasting impact on their lives.

The whole thing does a job on the mind. If I can say anything to you as a caregiver is don't lose yourself. Take care of yourself like you would a tiny newborn, showering yourself with love and postitive thoughts because if you don't you will resent your wife for it.

hope to you both and to your family...

 

 

sarahjesae
cure for parkinson

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Moeshawalter
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christine43
the greatest miracle in my life

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