I feel like I'm losing the caregiver battle

I need to know now how other caregivers cope with the ever changing dynamics of caring for a loved one with this dreaded disease.  One year ago this month, our world was turned upside down.  However, through everything we have gone through since then we have both been able to keep some semblance of our great senses of humor.  That is until recently.  My husbands last MRI (one month ago) showed stable disease but increase in radiation leukoencephalopathy.  He has increasing episodes of "tantrums" which usually result in verbal attacks against myself and our family pet.  I keep telling myself that it's not him doing this and everyone keeps telling me "you've got to understand".  I lost it with him last night after one of his rampages and now I feel like a total failure.  I know that if he knew what he was saying and doing, he would be devastated.  My question is this:  what are some coping mechanisms I could try?  I am only entitled to 1/2 day of homecare a week and family lives close to 2 hours away.  We live in a rural area so our closest neighbour is about 2 km from us. 

We do not have the luxury of garbage collection or a corner store, so my homecare time is used up going to the dump, grocery shopping and boot camp for our pup...how do you find time for yourself?!?!?!  It was easy up until this past Monday when he suffered a seizure and now is terrified when I'm out of sight...including just to use the washroom.   If I try to sleep, he wakes me up because he's afraid he will fall and I won't hear him.

I love him with all my heart, always have...always will...I just feel so horrible for getting frustrated with him.

Can anyone suggest anything I can try?

(I should note that he has a grade 3 anaplastic oligoastrocytoma, dvt's and left sided mobility problems.  He requires assistance with dressing, telephone use, etc...)

Thankyou for listening

 

On 7/3/2009 anotherdayinparadise wrote:

I need to know now how other caregivers cope with the ever changing dynamics of caring for a loved one with this dreaded disease.  One year ago this month, our world was turned upside down.  However, through everything we have gone through since then we have both been able to keep some semblance of our great senses of humor.  That is until recently.  My husbands last MRI (one month ago) showed stable disease but increase in radiation leukoencephalopathy.  He has increasing episodes of "tantrums" which usually result in verbal attacks against myself and our family pet.  I keep telling myself that it's not him doing this and everyone keeps telling me "you've got to understand".  I lost it with him last night after one of his rampages and now I feel like a total failure.  I know that if he knew what he was saying and doing, he would be devastated.  My question is this:  what are some coping mechanisms I could try?  I am only entitled to 1/2 day of homecare a week and family lives close to 2 hours away.  We live in a rural area so our closest neighbour is about 2 km from us. 

We do not have the luxury of garbage collection or a corner store, so my homecare time is used up going to the dump, grocery shopping and boot camp for our pup...how do you find time for yourself?!?!?!  It was easy up until this past Monday when he suffered a seizure and now is terrified when I'm out of sight...including just to use the washroom.   If I try to sleep, he wakes me up because he's afraid he will fall and I won't hear him.

I love him with all my heart, always have...always will...I just feel so horrible for getting frustrated with him.

Can anyone suggest anything I can try?

(I should note that he has a grade 3 anaplastic oligoastrocytoma, dvt's and left sided mobility problems.  He requires assistance with dressing, telephone use, etc...)

Thankyou for listening

I wish I had some advise for you or something that would make you feel better.  Unfortunately, I am going through the same thing. 

I wish I could give you a big hug and tell you everything is going to be okay.  For anyone who has never gone through this, they don't have a clue! 

I want this to go away.  I want my husband back. 

This is a VERY good website.  I hope someone responds to you and gives you some tips.

I'm sorry, I don't have anything good to tell you. 

But you are in my thoughts and prayers.  And you are not the only one going through this.

You can E-=Mail me anytime you need to talk: 

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

I know what you are going through.

Take care.

Penny 

 

 

Hello....

        I took care of my Dad and I do have a few ideas. Please call the Area Agency of Aging....they should be able to tell you who to call for MORE help. Also PLEASE call the American Cancer Society, listed in your phone book....They can also get you more help and will give you the support and ideas on how to handle all of this. I am suprised that your family doctor has NOT gotten you home health help....YOU also must take care of yourself. PLEASE rember you are doing your best and he doesn't know all the time what is happening. What about Hospice? They were a GREAT help to me with my Dad.

       Will be keeping you both in my thoughts and prayers.....

                            Hugs Sheila

 

                              

 

On 7/3/2009 anotherdayinparadise wrote:

I need to know now how other caregivers cope with the ever changing dynamics of caring for a loved one with this dreaded disease.  One year ago this month, our world was turned upside down.  However, through everything we have gone through since then we have both been able to keep some semblance of our great senses of humor.  That is until recently.  My husbands last MRI (one month ago) showed stable disease but increase in radiation leukoencephalopathy.  He has increasing episodes of "tantrums" which usually result in verbal attacks against myself and our family pet.  I keep telling myself that it's not him doing this and everyone keeps telling me "you've got to understand".  I lost it with him last night after one of his rampages and now I feel like a total failure.  I know that if he knew what he was saying and doing, he would be devastated.  My question is this:  what are some coping mechanisms I could try?  I am only entitled to 1/2 day of homecare a week and family lives close to 2 hours away.  We live in a rural area so our closest neighbour is about 2 km from us. 

We do not have the luxury of garbage collection or a corner store, so my homecare time is used up going to the dump, grocery shopping and boot camp for our pup...how do you find time for yourself?!?!?!  It was easy up until this past Monday when he suffered a seizure and now is terrified when I'm out of sight...including just to use the washroom.   If I try to sleep, he wakes me up because he's afraid he will fall and I won't hear him.

I love him with all my heart, always have...always will...I just feel so horrible for getting frustrated with him.

Can anyone suggest anything I can try?

(I should note that he has a grade 3 anaplastic oligoastrocytoma, dvt's and left sided mobility problems.  He requires assistance with dressing, telephone use, etc...)

Thankyou for listening

Contact American Cancer Association at 1800-acs-2345, they will give you a list of who could help / assist you on additional caregiving to your husband.  You by urself would be very tough.  My family has 4 of us to rotate to take care my mom in hospital and it is exhausting task against all the odds.  2 of us are eventually have to quit the job to take care of her around the clock over the year.

Best wihes,

Regards,

Victoria

I do understand what you are going through, My husband has a GBM dx 11/06. Until last summer he was "normal" but the cognitive, physical and emotional changes since last summer have been so difficult to deal with. I hate when people tell me, "Be patient, he can't help it. You know it's not the real him." I know all that, but it does not make it easier to deal with. This web-site has helped me a lot. 

There should be a social worker at the hospital where your husband is treated who can help you in many ways.

I have found the social worker a wonderful person to talk to, someone I can vent to and has been able to give me some coping strategies.

The social worker will also be able to help you find ways to get some help with your husband. Check you health insurance and see how much they cover for Hospice and for home health care. Our social worker did all the leg work to have my husband admitted to hospice-all I had to do was take the phone call from Hospice to set up a time for them to visit.

Hospice today is not what it used to be. There are many, many services available for the patient, but also the caregiver-one of them being respite care. My husband is doing fine right now-not dying any time soon, but he is only doing palliative care now so he qualifies for hospice.

There may also be volunteers in your community who will come and stay with your husband so you can get out. Look into adult day care programs as well. Not sure where you live, but see if there is a "Senior Helpers" in your area. My friend owns the company in MD and they have franchises all around the country. They send people out to help those who can't get out on their own or just need some help at home--sort of like babysitters for adults.

And yes, mnay of these things cost $$ and that may stand in your way of using them. So if family members say they want to help but can't b/c they live too far away, tell thme they can help by paying for some of these servies, if that is the kind of help you can use right now.

Those of us reading these posts, more than not, understand what you're going through.  We've had the same experiences of frustration, guilt, and thankfully hopefulness and love.  From your spelling, and use of kilometers instead of miles, I'm guessing you're either outside of the US or perhaps just foreign born??  The reason I ask is some governments  provide care and assistance that you may not have tapped into.  It may be helpful for us to know where you're located.  A bunch of us have past experience, and time, to be able to locate some resources that might be helpful.  I can only speak for myself...but, I'd be more than happy to give it a try.  Feel free to email me if you'd rather not post it here. 

Hugs

Thankyou to everyone for your kind words and suggestions.  I have posted on this board on other occasions and have always found excellent help and compassion, although I have always been upbeat up until now.

To answer a couple of questions, I reside in Ontario, Canada and we are very lucky to have a healthcare system which covers most expenses.  My biggest help issue seems to be where we live.  Hospice is not available even though we are only a little more than an hour from any major city.  As well, there apparently is a shortage of volunteers and paid employees willing to take on cases such as ours.

Our specialist blames the government for contining to shut down beds in our hospitals and says "welcome to universal healthcare".  We are seriously considering crossing the border to the United States to continue his treatment and have secured our passports for this purpose.  Duke University has expressed interest in my husbands case if progression continues.

I hope things settle down soon for us, at least plateau.  On Monday I am going to contact a number of agencies to see what can be done about my situation.  Being separated is not an option, when he is in hospital I spend the night either in our vehicle or in a chair beside him...it's just the way we have always been.

I will keep everyone in my thoughts as we continue the journey.

 

Hi, Sounds like you really need help. Can family come and stay with you at all? Do you have friends who can help shoulder the care? My husband was dx May 2007, he can no longer drive and lacks the strength to do so many things. I have learned to ask just about anyone for help that I need. Whoever is closest - which I am very lucky that my parents live a mile away so they get asked ALOT ;). Make no mistake though, I ask for help without a second thought anymore. I cannot do it all. One thing for sure, I have learned that I have to care for myself first - carve out some "you" time every day. It is the only way to care for our loved one. It is the only way to get through it. take care Mary husband 46 dx may 2007; full resection; monthly temador5/23; right sided deficits;

 

On 7/4/2009 gulerina wrote:

I do understand what you are going through, My husband has a GBM dx 11/06. Until last summer he was "normal" but the cognitive, physical and emotional changes since last summer have been so difficult to deal with. I hate when people tell me, "Be patient, he can't help it. You know it's not the real him." I know all that, but it does not make it easier to deal with. This web-site has helped me a lot. 

There should be a social worker at the hospital where your husband is treated who can help you in many ways.

I have found the social worker a wonderful person to talk to, someone I can vent to and has been able to give me some coping strategies.

The social worker will also be able to help you find ways to get some help with your husband. Check you health insurance and see how much they cover for Hospice and for home health care. Our social worker did all the leg work to have my husband admitted to hospice-all I had to do was take the phone call from Hospice to set up a time for them to visit.

Hospice today is not what it used to be. There are many, many services available for the patient, but also the caregiver-one of them being respite care. My husband is doing fine right now-not dying any time soon, but he is only doing palliative care now so he qualifies for hospice.

There may also be volunteers in your community who will come and stay with your husband so you can get out. Look into adult day care programs as well. Not sure where you live, but see if there is a "Senior Helpers" in your area. My friend owns the company in MD and they have franchises all around the country. They send people out to help those who can't get out on their own or just need some help at home--sort of like babysitters for adults.

And yes, mnay of these things cost $$ and that may stand in your way of using them. So if family members say they want to help but can't b/c they live too far away, tell thme they can help by paying for some of these servies, if that is the kind of help you can use right now.

Pls do not go to hospice if you think he would need more cancer care in the future.  The problem with Hospice and Acute Long term care (lack of cancer care) that they will prevent you to get additional treatment from a real comprehensive cancer care center.  My family finally got it in the hard way.  My Mom cant transfer to big hospital for any additional treatments as those stupid low tech narrow minded doctors cant able to treat her at hospice at all. 

Pls dont resource to that if you do him to fight to survive and to live!!

Regards,

Victoria

 

On 7/4/2009 anotherdayinparadise wrote:

Thankyou to everyone for your kind words and suggestions.  I have posted on this board on other occasions and have always found excellent help and compassion, although I have always been upbeat up until now.

To answer a couple of questions, I reside in Ontario, Canada and we are very lucky to have a healthcare system which covers most expenses.  My biggest help issue seems to be where we live.  Hospice is not available even though we are only a little more than an hour from any major city.  As well, there apparently is a shortage of volunteers and paid employees willing to take on cases such as ours.

Our specialist blames the government for contining to shut down beds in our hospitals and says "welcome to universal healthcare".  We are seriously considering crossing the border to the United States to continue his treatment and have secured our passports for this purpose.  Duke University has expressed interest in my husbands case if progression continues.

I hope things settle down soon for us, at least plateau.  On Monday I am going to contact a number of agencies to see what can be done about my situation.  Being separated is not an option, when he is in hospital I spend the night either in our vehicle or in a chair beside him...it's just the way we have always been.

I will keep everyone in my thoughts as we continue the journey.

 

 

There should be a nueropsychologist near where you live. They will hellp your husband to learn new ways to handle his cogitive disfunctions. They are trained to assist the patient and caregiver. You can contact Mary Lovely at the National Brain Tumor Society, email is mary.lovely@sbcglobal.net phone # is 800-934-2873. She has been very helpful for helping me understand what is happening to my son.

My son is 33 yrs. old and was diagnoised with AA last year. The unfortunate part to this story is he never was honest with his father and me. He had 4 surgeries to remove a 100 cubic centimeter tumor on his right frontal lobe.

We met him at Duke University Medical Center this past March and learned what he had already been told in Seattle a year ago.. He was told of his condition in Seattle where he lived. He just recently moved to NC due to his care is now coming from Duke. (we live in Ohio)

The other twist to this is he refused the standard protocol of radiation and chemo last year when he was told of his condition. He started taking Temodar this past March.

Being a parent of an adult child who makes his own decisions and choices has been very difficult on our whole family.

If you have the opportunity to go to Duke.......go for it. They know what to do!. I have read everything I can on this terrible disease and the treatments. 

I know my son's time is limited. I don't mean to be negative, but I am being realistic, due to no radiation. We still have hope!

No matter what..............keep your faith.

Faith is what sustains me! God Bless You!

Sheryl