cmacp:

Your description of the progress of your spousal caregiving for your brain-injured husband really mirrors a series of blogs I wrote called The Caregiver Journey. They are here:

September 22, 2008 Caregiver Journey I: the Heroic Stage
http://www.carepages.com/blogs/lifeofwellspouse/posts/20080731-caregiver-journey-i

September 23, 2008 Caregiver Journey II: Ambivalence
http://www.carepages.com/blogs/lifeofwellspouse/posts/caregiver-journey-ii-ambivalence

October 11, 2008 Caregiver Journey III: The New Normal
http://www.carepages.com/blogs/lifeofwellspouse/posts/20081010-caregiver-journey-iii-the-new-normal

Take a look! I wish you the best, and good luck getting on Medicare. Or SSDI?? Have you consulted an eldercare attorney for all the ins and outs?

We've been married 35 years and have two grown children. My husband has Parkinson's and suffers from anxiety disorder. He is completely homebound and has been for nearly a year. We actually qualified for hospice for six months but he "graduated" about a month ago because the quality of care helped to get him stable enough that he no longer qualified under Medicare rules. I am still working full time - both for financial and emotional reasons. I believe we are within months of having to place him in a nursing home. He has begun to fall and I think it is just a matter of time before he can no longer be home alone during the day. We don't have enough money to hire someone to come to the house and will have to apply for Medicaid. In our state, I can keep the house and one car. I sold our second car to my granddaughter several months ago and am trying to pay down all the debt that I can. ..

I've been through all the stages, trying to do everything perfectly, being angry, sad, depressed and, finally, accepting what I cannot change. My mantra is "it is what it is." I have discussed everything openly with my children and they totally agree that their Dad will have to go to a nursing home. In fact, I think they want him to go sooner rather than later. I pray that he will go quietly in his sleep before we have to do that.

Money is perhaps my biggest worry. If we get Medicaid, I'll lose his monthly retirement income. I will be okay with that as long as I continue working. If I retire now to keep him at home, I will take a large cut in pay which would make things difficult. If he then dies in the next few years, I'll lose his income on top of that and then things would get very hard. So, I am committed to working and putting him in a home close to my office.

He has been my best friend, lover, husband, father of my children for more than half my life but, for a long time now, he is a grown child who looks to me for everything. It is so sad. I reached out to my church, my family, friends and an angel of a psychologist who helps me stay sane. I'm in a women's life group at my church, though I can't go every week. Someone mentioned Red Hats in a post. I joined a group so I'd have women to do things with - no couples thank you! Best thing I've done for me. Many of them have experienced or are experiencing the same struggle and they are a wonderful support group and great fun. It took me a few years to get to the point that I could say "I deserve a life" and went out and got it.

We've done all the things you're told to do - have a power of attorney, advance medical directive, a DNR order, are pre-paying a funeral plan (even with his health problems, if he lives 2 years from date of issue, it will be paid in full with no more payments), bought funeral plots, talked about the kind of funeral he wants. None of it makes the present any easier, but it will certainly make the future less scary.

I understand completely that, if I don't take care of me, I won't be around to take care of him.   One of the hardest things is finding someone to talk to.  Most people seem to be very uncomfortable and I don't want to wear out my welcome with the few who do understand.  I have one friend who lost her husband to Parkinsons's and we have lunch every couple of weeks.  She has been such a blessing to me. 
 

Dear Anonymous:

I take it you read the Caregivers Journey blogs, links to which I put up in my previous post.

You have done a lot to help yourself. I just read a quote from Elizabeth Edwards new book, Resilience: "Others could help me, so many have, but it was always in me -- in me not just to find the answer, but to make the changes I had the power to make."  This applies to both the ill spouse and the well spouse. And you have certainly lived it, from what you say.

It's still hard. Do check out the Well Spouse Association Online Forum, here: http://wellspouse.org/forums [wellspouse.org] . There are people in your situation (they don't just have to have spouses with Parkinson's...) and they do understand. Emotional support is what you need, and what's better than getting it from those who have BTDT (been there, done that)!

Best, Richard

Hi Daisy,

I have been there, believe me.  My husband had CHF and a lot of complications, including neuropathy, inoperable blocked artery, borderline leukemia, MRSA, restless leg, prostate issues, etc.  He suffered with lots of symptoms and was hospitalized frequently, most recently for what we thought was an overnighter that turned into 6 months in 4 nursing facilities, home for 3 months and back into the hospital where he died three weeks later.  His CHF lasted 6 years so I am familiar with the ups and downs of caregiving.  I know the agony of taking a lesser part-time job close to home to allow for caregiving, lifting him an average of 12 times/day because he lost his ability to walk in the nursing home, hiring caregivers to help while I worked, dealing with the mood swings, the bills, etc.  I researched every avenue for help and the list at the end of this post may help you if you have not tried them already.  I lost him in January.  Even though I knew the end was coming and thought I was prepared, I still felt resentful for what I had to endure, including destroying my own back, and the guilt of being angry and impatient with him.  I had no help from his family and have none of my own.  God hands us various tests of our strength and someone always has it worse.  All you can do is keep going, keep communicating, and seek out all resources for help.

Alone now, I have sought out a therapist, and tried grief support groups which have helped.  There are no shortcuts.  Like someone said in another post, I am struggling for my new identity and it will take some time to figure out what that is.  In the meantime, it's one day at a time.  I still miss him terribly, even though it was the toughest time of my life.  The bottom line is, it's not easy while you're caregiving, nor is it easy afterward.  The only cure is time.  Take care of yourself. 

Books:

The Caregiving Helpbook, Powerful Tools for Caregiving, by Schmall, Cleland, Sturdevant

Homecare: The Best! How to Get It, Give It, and Live With It by Jo Whatley Cheatham

The End of Life Handbook, A Compassionate Guide to Connecting with and Caring for a Dying Loved One by D. Feldman, S.A. Lasher

Online resources:

NFCA - National Family Caregivers Association 

AGIS.com - Assist Guide Information Services

Caring.com

caregiver.org

familycaregiving101.org

strengthforcaring.com

medicare.gov/caregivers

alz.org

Thanks for your reply.  Yes, I've read everything I can get my hands on and will continue to do so.  I take strength from the experiences of others but, more importantly, from the Lord who strengthens me.

Joanie2, I am so sorry for your loss and your struggles now to find your way through the grief and all that goes with it.  I hope you will continue to seek out help until you find it.  Yes, time can heal depending on what you do with the time.  

I miss my husband.  We always had so much fun and now we can't even have a conversation.  He can no longer process a thought or make a complete sentence.  I am so grateful for the memories we made.  I talk to him about the good times and occasionally he responds with a clear remembrance of them.  Those are good times.

My husband has Schizophrenia, & alcohol dependence, too. He has a family, but, I've been his main support system for 10 yrs. It's been draining & stressful. I've been labeled a co-dependent. I recently asked him to move out into his own place, which he did. It's sad, but, had to be done. I was becoming increasingly more stressed/angry/depressed. He relapsed on ciggs/booze, & is having increased medical issues, too. I feel so alone. No one was there. No one sees what goes on "behind the scenes". I also, work in a locked Psychiatric Facility....so, the professionals knew this. I feel like everyone just let me do all the work; THEIR WORK! It got to be too much. I am sad that it came to this point. But, he said:"I'd rather be the man who gave you your life back, instead of the man who ruined your life". This was so nice to hear! Also, he said:"It's time for me to be more independent; I've been too used to you doing everything for me". How insightful is this?! I still worry, & we talk daily&visit often, too. He's facing some tough times. But, maybe for the best!

Yes, I feel that I let things go on way too long. But, a lot of it I blame on "the system". People w/ Mental Illness fall through the cracks when living in community & have a spouse who works there. I, finally, had to make the tough decision of asking him to move out. It's hard, & I worry a lot. But, it had to be done for both our health's. I have been able to enjoy some alone time, along with, family/friend time. He's going to have some tough times, but, hopefully, will do okay & learn from this experience. It had to be done. I'm still his main support system, & we talk daily/visit, too. Time will tell. Schizophrenia is a terrible thing to deal with.

Yes, being a spouse & caregiver is much different than caring for a parent, etc. People don't seem to get this! I'm glad there are others out there who do! I work for Mental Health, & care for spouse w/ Schizophrenia......same diagnosis, yet, such a difference when at work vs. home! Very hard!

Spockula:

Yes, in my opinion, caring for a spouse/partner with mental illness is much tougher than caring for someone with a physical chronic illness/disability -- and who has a positive attitude towards their situation. If you want to, please EM me with your story. richard@wellspouse.org

in my opinion its no different. my husband has alzheimers and it is a 24/7 job taking care of him. he can do nothing for himself anymore and believe me i get so stressed some days it is unbelievable. when you are in the house day after day and you go nowhere because no one will watch them it gets really hard. if i leave him with someone i have to do it at night because if he can not find me he gets mean with them. i usually put him to sleep before i can even go to the store. most the time he doesn't even know who i am. that breaks my heart but i know its not his fault. we have been married 23 years and together 24. i miss the days when we did things together  and had a great time. now it is like i am just a caregiver and nothing else. i bathe him change him everyday, give him his medicine, cook his meals and lay with him till he goes to sleep at night. I have my time when he is in bed for the night. i miss not getting to work anymore. i had to quit my job almost one and a half years ago and i really miss it and not having that extra money. you never know how much you miss till something like this happens. he is in stage 6 and i know it is going to get worst. i really feel for anyone who is going through this because your whole world changes

My husband of 17 years was diagnosed with M.S. 6 years ago. We moved from TX and I was planing to divorce him as he was just mean.  the day after we got here he got his first attack and as I was brought up, you don't kick someone when they're down.  It is very difficult to deal with him as he is unable to care for himself, but he thinks he can say anything. He cant walk without help, he just sits and watches t.v.  It seems that as long as I can keep an "up" attitude it keeps me sane.  People say they feel sorry for me, but they really don't understand.  It would be great to be able to talk to someone sometimes that can relate to my situation. 

needkandi: You can talk here, and also we have a Well Spouse Association online Forum here: http://wellspouse.org/forums [wellspouse.org]  MS is one of the illnesses that affects cognitions and moods; and they say that whatever kind of a person they were before, they are even more so that way after!

Our 10 yr. story is too long to write now. We've had many good times, but, the bad times began to outweigh the good ones. Too many things happened over the yrs. & he never seems to learn from "mistakes" or incidents. This last "scene" was the straw that broke the camel's back. I gave him chance after chance. I totally understand that a lot isn't his fault, but, some of it he can do something about. He relapsed on cigs/booze after 2 yrs. His health issues are worsening. It seems I care more about his health than he does! I ended up telling him to get his own place. We're still close/ always will be. I just can't stand to watch him slowly kill himself. There are many things he could have done to lessen my stress/work/worry. He's got a tough road ahead, & I'll always be there for him. I just couldn't stand the daily "stuff" any longer. He may, or may not get his act together. I worry myself sick, but, it had to be done. We talk/visit a lot. Time will tell!

Spockula, You were very brave to make that decision for telling him to get his own place. He must have realized in his own way what he was doing to you with his choices.  No matter how much you worry, it is not going to change a thing. The best thing is to focus on yourself at this point. You have earned that.

Yes, He made me feel better when he said:"I'd rather go down in history as the man who gave you your life back, instead of, the man who ruined your life". Also, "I don't want to be a burden to you". It broke my heart, but, it was true, & it was very strong & brave of him to make this step. I'll always worry; just my nature. He's even trying to quit smoking, for the 3'rd time w/ emphasema(spelt?). He also stated:"It's time for me to become more independent. I've been too used to you doing everything". His place was actually clean & he's really trying. I'm sure he's scared & alone. He hasn't been living alone for over 20 yrs. Plus, there have been some weird, scary incidents out there where he's living in an isolated area. Anyone would be freaked out, & paranoid...nevermind having this diagnosis! We're still very close, & I think it'll be the best thing health-wise for me at this time. Plus, it forced his family to become more involved, which was much needed!

I don't know what the answer is caring for a spouse. I have been a full time caregiver and have had a full time job for more than 12 years. I do have respite service, 4 hours a week. Can only be done when I am not working, but I get the appartment cleaned and I do the shopping during that time. I suggest you contact Senior Services or the Altzheimers Association.

My husband has always been a controlling person even when he was well. I was able to work around it. But now he has dementia, congestive hartfailure and diabetes. I work full time, have no car. I could buy one now after years of working, but I am afraid he would get a hold of the keys and try to take the car. He does not know he can't drive anymore.

All I do is work, a very demanding job as a supervisor of a busy department, come home, clean up the mess he makes, get dinner, breakfast and lunch made. Get his meds. Make sure he takes a shower, etc. Schedule appointments, take off work, ride the bus home, pick him up and ride 2 busses to his appointments.

Now he thinks that I am having affairs and spend all the money. Give me a break.

He messed up our financial situation so bad that I had to file for bankcruptie after his stroke and lost everything we ever owned. House and cars and a savings account for my retirement.

I am 65, started a 401K 7 years ago and we all know what happened to that.

This is the 4th of July weekend, a long weekend for me. People in the office asked what I was going to do for fun. I don't know how to have fun anymore. If I have some time I try to clean up stuff, my husband is a packrat, I have to throw away newspapers and magazines when he sleeps, and make some space in this tiny appartment.

I have been proud of what I did the last 12 years, advanced in my job, being able to support us, taking care of my husband etc. But now I am bone tired, it is even effecting my job and that is scary.

My daughter lives in PA, 6 flying hours away.

My son is 1/2 hour driving away, but lives his own life. No help there.

When you are poor, you can apply for help, Scopes and other wellfare programs. When you are rich you can hire caregivers. When you give it your all to support yourself and the husband you are taking care of, did I mention health insurance cost if you don't have a job?, there is not much help.

What is wrong with this picture America?

I don't want to quit and I don't want and can't afford to put my husband in any kind of facility. I have seen very scary scenario's.

We are unpaid caregivers, saving the state and federal govs tons of money.

We are getting burned out.

I was at a caregivers convention where I learned that more than 25% of caregivers die before the patient they have been taking care of. Food for thought?

WOW! It's nice to know we're not alone here. What is your husband's diagnosis? It's a very hard life, & YES, we're saving the Gov. tons of $$$$! Then, when we ask for a bit of help...nothing! This country is going down the tubes. Thank God for people like us! I just hope someone like me is there in my time of need. Lately, it seems, I'm the only one either of us can depend on. Take care.

My husband had a TBI 2 yrs and 3 mos ago. He's permanently Disabled. I've been looking forwrds to Sept when he finally gets Medicare. It's been a wing and a prayer to keepour finances afloat. As we get closer to Medicare, I actually become more nervouse because we're close, but not there yet. An illness, or fall could still bankrupt us.

To my point. Everyone talks as though Medicare is free. Really? It's not at all. We live on his SSDI and I quit work early so we also have my early SS. WE make too much for medicaid in our State. And, too much to qualify for Medicaid paying our monthly copays. Free? I don't consider $96. X2 persons a month - free. Also there is the $39 plus $29 for our 2 part D. Then God forbid we need to use Medicade, we get the bill for the first day in the hospital, plus the deductables for the 7 medications he's on. I barely get by as it is. If we were single we would each get full Medicaid and gov help paying our medicare parts. But, because we're married, the gov has a lower income for married individuals. I understand why so many people on this site get divorced. It's a matter of life and death. Remaining married makes it impossible to qualify for life giving financial help and meds. Also, if we stay married, we can have just one car - even though this leaves me no backup vehicle which is necessary. If we divorce, we can have 2 vehicles and still qualify for Medicare/Medicaid financial help. Go figure. I'm angry because I've been thinking that medicare would be our life line. WE have been dependent on our local hospital's Charity care til now. I've been afraid to travel away from the area due to this. Medicare was to be the freedom to relocate and travel to see family. without the fear of a medical emergency with no insurance. He's in his 6 mos initial sign up period. he's not supposed to be discriminated due to his pre condition. So why did he get an insurance quote so much higher than mine? No descrimination, but they charge almost $300 monthly copay for Medicare supplementary insurance? Is that legal? Some of you other ladies have been doing this for many years more than me. At this point I can't bare to leave him to a nursing home, or let him live and fend for himself. He say he wants to, but he has Alzheimers and TBI. It would be cruel. Like leaving a child to live alone. I ask you ladies who have left your hubbys. Did you leave/divorce so that he could get the government help he needs? I really am worried about this medicare situation. We simply have no extra $$ in our budget to start to pay for the copays and deductables re by Medicare. What in the world are they thinking. Last night I watched a guest on The Charlie Rhodes Show, and heard once again that Medicare is "free". Sometimes I wonder if I'm on the same planet as everybody else.

I am so sorry for your situation, & totally relate. People don't understand that Medicare is like this these days. Very sad state of affairs in this country. How did he get a TBI? I work in the profession, & have a husband w/ schizophrenia. I feel your pain, & you are not alone. Yes, it does feel like another planet! Most folks don't get it! Glad we have this, at least, to vent!

I too hope there will be someone like you and me to take care of us, when  we need help. I just hope I stay healthy to keep doing this. You are right, we are the only one we can depend on

There are hundreds of thousands of us caregivers for spouses. I don't know you, but we already have a bond and even though I am petty fizzled right now, and  the thought of having to go to work tomorrow does not excite me, I just wanted to stay in touch.

One other problem on my mind is the legal issues. We don't have a will or any health directives.

I have bought the software and I thought I would have time this weekend to at least start. Did not happen. It probably sounds familiar.

When you have a chance, please share your challenges. Who knows, we may come up with solutions.

Take care

Thank you for sharing your story.

All of us caregivers will be facing what you are going through.

One thought I have and I know you too, no regrets, no guilt feelings, no I should haves.

Because we have done what we could. We gave it our all.

Bless you, take care

Anny:

The statistics are more like 6-8 million spousal caregivers. 23% of all caregivers over the age of 65 are spouses caring for spouses, and 6% of those 50-65.

How are you doing now, and your husband?

I would like to hear

Take care,

You are right, the numbers are mindboggling.

i was talking about the state I live in.

Are we all silent. I have been for a long time. I felt and still do feel it is what I need to do.