Is your husband's diagnosis dementia? Yes, this is a symptom, unfortunately. So sorry your visits were ruined. Yes, it's hard to "tuck" away the hurt/anger, but, they probably don't even realize or remember their behavior. Sounds like you're doing the right things to care for yourself, at least. It's very hard. Stay strong.

This is a very sad & difficult story to hear. You are very strong. The day care folks/ etc. are used to, & trained for the "hitting" behaviors, etc. You need a break. What a horrible disease.

Yes, we all need Blessings from above. Life is very hard. We all need the support of other's who are in similar situations. Often, we feel alone. At least, this site gives us a place to relate & vent! Also, people can give solutions, hope, or just words of encouragement/validation. Helps a lot!

Hello;

I am in the same predictament, My husband has esphageal cancer, I do it all without no help, it is exhausting,  I get no help from family, I say with him 24/7, plus everything in the house , running to stores, pharmact, U name it i do it all. he had esphageal cancer, I understand what your going threw,

I don't have it either, we had to use up all our saving, his 401K from work to pay for his treatment, we are in so much debt, all i can say is it will take up all your time. if you need to work,  contact a case manager from a hospital that he goes to, or the American cancer society.they can give you alot of advise or send you to someone who can.

TY

Jackie

Tigerette, ptoner51 and others:

For a perspective on your situations -- where you've been, and where you are now, check out these blog entries:

September 22, 2008 Caregiver Journey I: the Heroic Stage [carepages.com]

September 23, 2008 Caregiver Journey II: Ambivalence [carepages.com]

October 11, 2008 Caregiver Journey III: The New Normal [carepages.com]

Rather than a steady progression between the stages, there is a kind of back and forth, but as you become more resilient in caregiving and in looking after yourself, you find new ways to re-achieve the "New Normal."  I wish you the best!

P.S. Added my comments today to recent responses by a reader.

pttoner; yes, we live in Nc too and I understand completely. There is no help in this State. This State does not waive the normal income limit for medicaid if you have Alzheimers/ Dementia/traumatic brain injury. I've been trying to get our home sold and move to Fla also, but I don't know if I'll get it done in time. I've spent the last 2 years painting, remodeling etc - basically getting it looking nice enough to put on the market. All the while since 10/07, being his only Caregiver. He's on SSDI and I had to start colecting SS early to make ends meet. It's been a lot of work and effort but he seems resentful. Lately he's breaking things faster than I can repair them. Holes in newly painted walls, broken chairs, pots, pictures torn off walls. This Am he smashed the glass top stove with the frying pan. We haven't had a break from each other in a year and 1/2. His family has been trying to get Guardianship over him ever since the injury. I think they're purposely with holding help until we both reach the breaking point. I think they'll win. He's going to visit them in 2 days. They may not let him return. Our lawyer expects them to apply for emergency custody and keep him. In their State, the Guardian is allowed to disolve/annaul the marriage of the Ward. They've been very secretive all along so I don't know what they're up to. Every action in the past has been a total surprise. I may be forced to file for divorce so at least i won't be left empty handed. If they get an emergency Guardianship and custody of him while he's visiting, and they file to annaul the marriage, I'll have no right to any of our property. They will then have the right to sell our home. To make it worse, my husband is ambivalent re his feelings and what he wants. Our maritial roles have changed so much after the injury that it has effected our relationship. He used to be the macho leader and he resents me for being in charge. Brain injuries are not condusive to romance.

As bad as it all sounds., I realize I and he need this clarification by spending time apart. As long as I resist him seeing his family, it only makes things worse. I'm finally ready to loosen my grip and realize that I can't control all outcomes. My major fear is that he'll realize that he wants to come home again after it's too late. It's been very difficult keeping our home together for 2 1/2 yrs on s.s.  He's a high maintainance person since his injury. I doubt that anyone in his family cares enough about him to devote all the necessary attention that he needs. Once they've destroyed what remains of our life together, they may just stick him in a nursing home and that will be it.  I just have a sick feeling in the pit of my stomach. Technically, I lost him 2 1/2 yrs ago when he was injured, but I've been able to keep him close physically. I feel like I'm facing a loss that I've been putting off.

cmapc, you neeed to see an attorney asap. It might just be the best investment you can  make...good luck.

cmapc, sorry I meant to say, it will be the best investment you could make at this point

I understand fully. My husbands family doesn't bother me though. They don't even call to see if he is dead or alive. They just make remarks that I only keep him home to get his disability and if they only knew that sure does not pay my bills hardly. I had to quit my job one and a half years ago to stay home with my husband and that was a big chunk of my lively hood. I am not old enough to get my ss yet. So I just make the best of it. He gets mean with me he doesn't break anything. I pray for everyone on here that goes with what I do because it is so hard. Some days I just want to hide away from everyone

My hubby will probably end up w/ that, too. Already has had espophageal ulcers, Barretts esophagus, acid reflux, emphysema, & more. If he doesn't change life-style, he'll die before 50. It's hard when you're the only one who does everything. People don't get it unless they live it! Stay strong!

Whoa, this is a sad, & heart-wrenching story. I guess you'll have to leave it to fate. Whatever's meant to be will happen. But, losing everything...home, etc. Plus, you're right, they'll probably put him in a place fast. Sounds like you've done all you could possibly do at this time. Brain injuries are so sad. What ever happens....you can visit him & sleep at night knowing you did the best you could, & with no ill intentions.

Wow. It's so sad to see some families "true" colors. I can't believe how people are. SAD!

People suck! Sounds like you should hide away from most of them! Oh, like his $$ is so huge, & like anyone would handle the care for that amount! So sick of assholes! Stay strong.

Hello;

I have the same problem, I have 3 other kids all older, and 1 that is 18 ys old, My husband has Esphageal cancer, went threw chemo, then surgery, then back to chemo & radiation, and still going threw it all, by myself, I get no help, I get from the kids are I want to remember my dad the way he used to look like" I told them thats not the way it goes, he feels like they don't care, they don't want to see him b/c he lost so much weight, he can't eat, he's on a feeding tube. he constantly dehydrating.he had all his lymp nodes out , nobody was there for meand him, now he's loosing his bowels, you think i can get an help at all. NOPE. It is hard to see your love one suffer so much,  family can also be so rude, I just can't believe it, especially now when their father needs them the most now.

Thank You

GOD BLESS

YOU ALL IN MY PRAYERS.

I'm so sorry you're going through this, alone! It's hard, but still, these folks need to "step up" & be there for both of you. I'll never understand human responses. SELFISH! What goes around/comes around. You are all in my thoughts & prayers. My man is trying to quit ciggs, again. He's on lozenges. 2 days, now. Of course, he still has many other medical/psych problems, but, this is a huge accomplishment! Take care. Stay strong.

Hi everyone; Thank you so much for your kind words. They really mean a lot to me. Tonight I wondering "who can I talk to?"  My adult daughter doesn't understand because she's never been married. I realized that I can talk to my friends on the Spouce caregiver group. You all understand.

At 6:30 I met my husband's brother in law and they are now traveling up to his family by car. There's been a lot of emotion for the last couple days. My hubby has said that he doesn't want to live with me anymore, that I need a real man, etc. It's been horrible for him these l;ast couple years. He's used to being with his big family. Instead, he's been cut off with me 700 miles away. His agravation is taken out on me. Plus, I believe his TBI induced Dementia has taken a turn for the worse. He ued to be a very mild mannered man. Yesterday he turned over in bed and said he was going to poke my eye out with his fork. That's just a sample. He's become scary. My daughter thinks I'm crazy but I still worry and care about him. Tonight I'm feeling very very low in spirit. He's very weak and I wonder about him traveling so far. It's a tedious trip. How is it possible to still love someone who says such nasty things and is scary at times? My daughter says it's dysfunctional. But it's not. It's an illness/injury. ..................Well, my cell phone just rang and it was my hubby caling from the Interstate. He sounded so normal Correction. His voice will never sound normal like it used to. he was Intubated and had a tube down his throat. His old velvety voice is gone. What I mean by normal is he sounded glad to talk to me and was concerned that I made the 2 hour trip back to our home safely. For a TBI person to show concern about another is very significant. Why is it that the good emotions like love, compasion, empathy, etc get flattened out after a brain njury, while the bad like anger meanness, rage, etc become amplified???

Thnks to every one out there from your fellow traveler; fellow sister.

Wow. You are so strong & faithful. Yes, TBI is the worst. I'm so sorry this has happened to BOTH of you. Not sure why brain problems induce violence. Probably the part of brain that's affected. Also, chemicals/ electricity get mixed up. Very complicated. I'm glad you're getting a break, & he's realizing how much you mean to him. Hold onto the happy times/moments. Take care & time for yourself, too.

Hi! I have the same problem. I really don't want to be in this relationship. There have been ups and downs.  More downs.  He has early tages of alzheimers

I'm so sorry you're in a relationship you don't want to be in. Can't you do anything? My husband has gone 4 days, yet again, without cigs! I'm going to rent the place next door to him. Very weird, but, it will be the best set-up for us. His family failed "the test" of him living out there alone. I'm actually, the only person who's there for him for real. Sad, but true. I tried to "delegate"/ let go/ etc. We still love each other, & I'm the only one who sticks to her word, & follows through w/ things. The system has failed him, too. We'll be in a duplex. Still "a couple", but, have his/her space, too. It's embarressing, but, will work for now. Of course, I'm paying more than he is! Double to be exact!

Hello,

I am so sorry to hear that you are having a hard time.

I am a social worker and research assistant at the University of Michigan-Ann Arbor. We are working on a study about spouse caregivers who are in a second or third marriage etc...and caring for a spouse with some form of memory loss. I wonder if you are in this situation - if either you or your spouse has been married before - and if so, would you be interested in taking part in our study? If so, please let me know and I would be happen to send you more information. We would interview you via telephone at your convenience and would send you a $20 Target gift card. Thank you and please take care.

Sekai K. Ward

p.s. - my email address is skward@umich.edu

I am a spouse caregiver and we are both on our second marriage. my husband has alzheimers and if you want to email i will be glad to do your research. my email is toner_pamela@yahoo.com

I'm in that situation. Please EM me, richard@wellspouse.org

yep--me too--and I do think there is a difference  selltile@telus.net

Hello Sekai;

  What kindof study are you doing? This is my second marriage. but i don't which person you were respomding to.

thank You

sopeevedoff@yahoo.com

Tigerette, ---Jackie