I TOO AM A CAREGIVER FOR A SPOUSE. HAVE BEEN FOR ABOUT 4 YEARS. MY HUSBAND HAS ALZHEIMERS. I HAD TO QUIT MY JOB MARCH 2008 BECAUSE HE GOT TO THE POINT I COULD NOT LEAVE HIM ALONE. I TAKE CARE OF HIM ALL BY MYSELF ALSO. SOMEDAYS ARE REALLY HARD AND HE GETS ANGRY EASY SOME DAYS.  I HAVE DO TO EVERYTHING FOR HIM LIKE HIS MEDICINE, COOK FOR HIM. HE CAN STILL FEED HIMSELF BUT THAT IS IT. FINANCIALLY IT IS REALLY TOUGH. WE LIVE OFF HIS DISABILITY AND I VERY RARELY GET TO GO ANYWHERE UNLESS HE IS WITH ME. I UNDERSTAND WHERE EVERYONE IS COMING FROM. SOMEDAYS I FEEL LIKE I JUST WANT TO DISAPPEAR AND I AM SURE EVERYONE ELSE FEELS THAT WAY FROM TO TIME ALSO. I AM SORRY FOR YOUR LOSS DAISY.

Thank You ptoner and sekai. Please don't be sorry anyone for my loss or the fact that now I will be alone. I have been alone for a long time, the person I knew was gone a long time ago. It was a relief when he passed. He is in a better place now and I am sure if he was able to express his thoughts after death, he would agree wholeheartedly. Ptoner, just a suggestion, you might want to look into state programs for help with his care, do not know where you live, but because of my experience, there were state agencys out there but finding them was really difficult. The state medical plans in some states do have some help available to low income peope and people like us that  made just a little too  much to qualify. You just have to find them. I am in California and I had spent a long time checking for somewhere to get help with this. No one seemed to know about it at the state or county agencies I contacted. I was very frustrated that I would not be able to  place him somewhere when the time came. Finally when he went to the care facility from the emergency room, the care facility told me about the help I could get from the state. If I had known about it before it would have eased the burden a lot. It was the not knowing and what was I going to do that was making me crazy in addition to the problem at home. ptoner, I am sure you read my postings and I know exactly how you feel. Just knowing others were in the same spot I was in helped me  a lot. Also talking about the feelings honestly helped a whole lot. Others said they felt sorry for him. I felt sorry for me and expressed it. Unless you are in this situation, it is sometimes hard for others to understand. As I said in the past posting, I felt like the life was just being sucked right out of me. Daisy

Dear Daisy,

I found your posting to be very insightful. I can certainly understand why H's passing would come as a relief for you and perhaps for him as well. Your words  "I have been alone for a long time, the person I knew was gone a long time ago" helped me to better understand what those in your position are going through. Thank you for teaching me something.

Sekai

I have finally made my decission after being the sole caregiver for 12  years.  I have been seeing a therapist for the past year and realize that after 42 yrs of marriage, I have nothing here at home nor will it ever change if I stay.  I have discussed the problems with my spouse who is impaired from a stroke and brain stem anurisum and is resentful of my decission to have him live in an assisted living facility.  I am selling our home and using most of the proceeds to help pay for his care.  I will them be getting a divorce and moving on to the next stage of my life. I hope to continue to help him in whatever way I can but as other spousal caregivers have said, I no longer have a husband and I have been only a caregiver for the past 12 years.  I have anger and frustration that I don't want to take out on my spouse or children and I feel that this is the best solution for all concerned.  I did find out that he is able to get benefits from the VA due to his disability and this is a fairly large sum.  I wasn't aware that these benefits were available and it's just another government program that many people aren't aware of because it isn't very well promoted.  I feel somewhat overwhelmend at what I'm about to do and truthfully, I'm scared but feel that this is the best answer for me.  I still care for my spouse but the feeling of being alone and having to take care of everything is something I can no longer cope with. My spouse will be much better off in a facility where he can socialize with others if he so chooses and receive care from indivuals who are not resentful towards him.

I am sorry. I can not do that to my husband i have been taking care of him for almost 6 years but i am not ready just to throw away 24 years of marriage. I know he is not like a husband anymore but that does not stop me from loving him just the same. He did not ask to get alzheimers and live like he lives but I wish you luck in your decision. Hope it all works out for you

I so know how you feel. Caregivibg wrings it out of you and you go through a grieving process on a daily basis. I wish I had the courage to divorce and get on with it. I am placing my husband in care but the demands of care still keep coming. My heart goes out to you!

I know how you feel and I thank you for your comments. Hope you can hang in there.

Getting a divorce from your ill spouse doesn't mean you're abandoning him/her. I know many people for whom the strains and  stresses of spousal caregiving got to be too much and who, whether separated because their partner is in an institution, or divorced, still visit them daily, or keep a watching eye on their care. Of course in some states, it is actually financially to one's advantage to get divorced -- where there is community property in a marriage, and there is a limited lookback period.

It 's not so much a question of having the courage or not to do it, as it is of taking a look at your own situation and (maybe with the help of a third person like a couselor/therapist) recognizing whether one is in a too-stressful situation, and needs to get out of it. Some chronic illness involves cognitive problems, and that can seriously affect the attention span, mood and socialization of the ill spouse.

Daisy, I have had to place my Mom in first assistd living, then a nursing home.  She has too much income to quailfy BUT there is a program called QUALIFYING INCOME TRUST that may help move the finances in order to qualify.  Also, I have heard of people who actually divorce their spouses in order to qualify.  Every city, county should have a SENIOR CITIZEN department to assist seniors.  Get your daughters to help you find out what is out there.  Sometimes it takes a village to find the answer where seniors are concerned - why I do not understand.

Take care of youself.

You have won your angel wings.  Hopefuuly, you will have some  peace soon.

All will be okay.

Hello anonymous, I understand how you feel. I am just beginning this slow walk. We have been married almost 43 yrs. I've known him since 5th grade! B was diagnosed last year, so he is still in the early stage. a few memory glitches, etc..Thanks to the television program on altzheimers, he just realized that this disease will kill him. He is afraid, and I am feeling the loss before he is even gone.....We made it through the loss of our youngest daughter (25ys, young.) seven years ago. With Gods grace I'll get through this also. I feel for all of you who are going through this terrible journey. I'm thankful for this site, if only to vent the pain.

iIknow its very difficult,but their are finacial support everywhere  even if you have some money if your husband is a veteran you can contact veteranS express they allow up to 2000 a month to care for your husband  it may take some time.you have to show some hardship. I live in connticut they have programs i pay nothing for my mom for home care and respite center.please contact medicaid for a social worker or  your hospital they will have info for you

 Daisy 3rc My best wishes,.People worry about being selfish,but if are too giving you may have nothing left of your self .I have known so many people who have become martyrs  and have a struggled to find themselves again.sometimes not making it.

Yes indeed. let's have more on this site about Caregiving for our spouses.

I am glad to find this thread and agree wholeheartedly that spousal care is completely and totally different than parental. The biggest difference is the loss of my sweetheart and my helpmate.  Our roles have completely changed.  There's a lonliness to loosing that person - especially when one expected to have many more productive adult years together.  It's sad to see this once robust man so frail and dependent. And, he recognizes his loss too. He has been diagnosed with early Alzheimer's and Dementia as a result of his injury and eventually will have to be placed in a care center. Caring for a spouse is very lonely. The social networks we depended on break down. We're not a lot of fun to be with any more and M gets too tired to attend even if we did still get invites.  One by one as it has become apparent that M will not recover, our old friends have stopped coming and calling.

Worse is the abandonment by our families. His mother doesn't like to call because it "upsets" her. His sisters have been viciously critical, not helpful. I've been told these are normal reactions. They rise from guilt, so those not doing the 'roll-up-your-sleeves' work, mentally defend themselves-  to themself and others - by harping on what a terrible person I am, and how if I would just 'let them', they would be caring for their brother and getting him better medical care. However, they haven't even done something as simple as checking his eligibility for medicaid in the States where they live.  I have been hurt by slander saying I'm just caring for him for the money and a cheap place to live. There is no money. I can't even get life insurance for him because of his pre-existing condition. I've had to give up working outside the home and forced to take SS early to make ends meet - while they're free to earn and enjoy life.

Various assistance programs that are available to singles, have lower income limits for a married couple. Our two incomes if considered separately would allow us to be eligible.

I've been the sole Caregiver for my 57 yr old husband after he had a traumatic brain injury 2 yrs ago.  When he was fast tracked for SSDI, he was slightly over the State Medicaid income limit so we lost all inhome assistance. Caring for his physical/medical needs, running the home on a now very limited budget, is a full time job in itself. Sniffing out the various small resource groups for help is sometimes impossible for lack of time.  The yearly Guardianship, Payee reports, Federal and State tax returns suck up remaining time. Two weeks ago, I had a break in form filling responsibilities - first in over a year. Now his 2yr and 5 mo wait for medicare is almost complete and it's time to start all over again - trying to figure out what plans, and finding financial resources to help pay. His head meds cost $500 a month if out of pocket. Then there are his heart meds. I'm finding that Medicare will not be the lifeboat I had thought.  

Well I've rambled on. My point is that although there are similarities between parental and spousal care, caring for a disbaled spouse has it's own isues.

I found it is better to let it out than to keep everything in. Some people around us always have a better idea on how to take care of someone. It is like a blind man feeling an elephant, they do not see the whole picture. When my children were young, I noticed that if I came across someone that had never had any children they always had a better idea not taking in consideration there was a child that had different ideas of how they wanted attention. In taking care of a spouse, it is basically the same. As long as you know in your heart you are doing the best you can that is all that matters. Please do not feel any guilt because of what someone else says. The most frustrating to me was the financial problem in addition to everything else that was going on. Now that H  has passed on, I got a little dog that keeps me company and no matter what she is always glad to see  me. Am I lonely, not at this point and I really do not think I will be. I feel I still have the rest of my life left.  My daughter pointed that fact out to me a couple of times when I was dealing with all this and it is true.  Daisy      Note for Octoman and others that have responded, Thank you

Daisy3rc I did not say that I had experience of careing for my schizophrenic mother and now my disabled wife there is no comparison.Someone physically disabled can be a joy to help.Someone who is mentally disabled who does not recognise you,or that there is anything wrong with them,can totally disrupt your life

you are right when a spouse gets alzheimers it seems like friends and family just seem to disappear. i've even been told by a sister-in-law i only keep my spouse at home to get his disability. of course they don't seen i had to give up my job which i made doubt to take care of my spouse. it is very hard financial and people can sit back and talk all they want and say things, but till they walk in our shoes they have no idea what we go though. i get no help from family either i am home 24/7 with my spouse. i miss him as a husband and i have thought many times about putting him in a home but as of yet i can not bring myself to do so. his daughter told me when the time comes you will know it has to be done.

ptoner, the daughter is right. When the time comes, you will know. There will probably come a point when it is better for him to be placed where they can give the care that is required that you are not able to.  When that time comes, it will not be easy for you, but we have to do what we have to do.  The one H was going to go to was clean and well staffed and the residents had activities they could attend. They welcome visitors and you might want to look into some in your area for the future. It may help you if you do have to place him. Talk to some of the residents, they love to get company. One day when I was there, they were taking a group of ladies in wheelchairs to a red hat function. They were all dressed up in their red hats which were furnished by one of the nurses at the facility. Another time someone was coming in with a therapy dog that the residents really loved. They had bingo and other things to occupy the residents also. Some were to the point they could not participate but they were still made ready as if they were. I agree there are bad places and there are good places, but you can keep tabs on what is happening by just going frequently. Daily if you want. People our age remember how mental instutions were when we were young and still have that idea that they are that way. I admit I have painted a rosy picture and again, they are not all bad and they are all not good. Once they are there you can still take them out for a visit or to dinner or for ice cream or whatever you want them for. If you have a pet, you can even take them to visit too.

Octoman, I know what you mean about caring for a disabled person. As long as the mind is intact, it is a whole different situation. That person is still there. When the mind goes, they are gone for good.
 

daisy3rc yes you are so right the home my mom went to was like that,they also had a theraphy dog ,and my mother was allowed unlimited visits which enjoyed even though she had no memory.

ptoner51 said "his daughter", and also mentioned comments from in-laws that she is only interested in her husband's Disability check. Are there other 2nd wives out there who are distrusted by their inlaws?? Caring for a Disabled spouse is difficult enough - (all the previous responsibilities of two persons, plus the new ones that come with the Disability) - being insulted for the work you voluntarily do is inhuman. I don't begrudge the opportunity I hve been given to care for my spouse; not for one minute.  I regard each minute after his injury as a gift. I just don't want to be insulted for the work I do, for the financial sacrifices I have made so that we can continue to be together.

I too have been insulted by my hubby's family members who have spread the word that I'm in it for the financial reasons. Our income is so low, that most of the tax deductions/credits are wasted on us. Our SSDI and SS falls below the taxable level anyway.

Ironically, my husband would have been a "goldmine" in tax/Medicaid deductions/incentives to his in-laws who wanted to move him into their  home. Their income is higher and they could have  deducted their  housekeeper, home improvements, auto,  and been paid by Medicaid for  Caregiving. Our State's Medicaid doesn't cover my hubby's Disability. their's does - has a Waiver for it. Their State also allows the  Guardian to disolve/annaul the "Wards" marriage - regardless of the feelings of the two persons in the marriage - sell the maritial home, and control all the assets. Guardianship laws in many States allow the Guardian to disolve the marriage and assets of a Ward.

As time goes by I suspect that snatching this financial 'bone' from my In-law is the real reason behind my name being smeared in the family. If his care and safety were their real concern, they would call him more than just once evry 6 months. His family has expertise in State social services, nursing, and law - skills that could help in practical non financial ways. Instead they used these skills to try to destroy our personal life. I guess I am bitter to some degree. I definitely am in shock. I never knew a family that saw dollar signs so quickly after a Traumatic accident. As such I was completely blindsided and unprepared. It took me over 2 yrs and fighting off two attempts to gain Guardainship over my husband, to open my eyes.

Some people are crazy. You take care of your spouse the best you can and  they want to fight you for it. Yet they are not around to help. I know because none of my in-laws even call to see if my husband is ok or not. They have money but they could care less as long as I don't ask them for anything. I wouldn't waste my time asking them for anything. His daughter would do anything for me to help her dad. She calls every week to make sure he is ok. I know how hard it is to make it financially we live solely on my husband's disability and nothing else. The state where I live does not pay for caregiving for family members either. I wish you the best of luck and keep up the good work. I would not give up any of my responibilities for anything

Anonymous- All I can say is Welcome to the real world. Unfortunately there are people like that in this world and they are usually ready to point fingers if it is to their advantage. Just hang in there and do what your heart tells you to do and never mind what others have to say about it. If I was there I would give you a big hug. Daisy

Wellspouse; Interesting concepts. I would say that the first year after my hub's injury , I tried like a maniac to do everything, be everything, achieve everything. Convinced that if I worked myself hard enough, that I could find the right treatment/cure and keep our home from falling apart. Yesterday, 2 yrs after the injury, I received our first 2 letters from medical collection agencies. You see for the first year or so, I "worked" 18 hr days searching out, applying for, etc every medical charity program available, and sold every personal item to raise cash -- to not go into bankruptcy. Our State has no Medicaid coverage for my hubby's brain injury and there is a 2 yea/5 mos wait before Medicare is available.

My mental attitude was throw every ounce of strength into the battle and hold down the fort until the patient recovered - or until Medicare kicks in.  My goal was not to loss everthing that my husband worked all his life to acheive. I wanted him to recover and not find it all gone.

Well I guess I'm entering the last stage - resignation. Medicare will kick in 2 1/2 mos. A year ago, I would have freaked if I got a bill for $500. Today, I cross my fingers and am cautiously optimistic that we will cross the finish line soon. If a $500 - or even a $1,000 medical bill is all we have outstanding - after the ordeal we've been through then we are blessed indeed. Also, I finally realize and accept that my husband is never going to recover from his brain injury. I am now excited about small victories, like when he did several loads of laundry last week, or the fact that he wants me to teach him how to make coffee for himself. Yes Wellspouse, this is our new life. I'm more relaxed and that helps us both. I no longer am trying like a maniac to hang onto the old life we had. I do hang on to our old answering machine message,- even though one phone # has changed _  because it's the only memento I have of M's old voice.  He had a lovely smooth baratone voice before the injury. One day I'll be able to let that go too I supose.