'Caring for a spouse' posted by Hopen @ {post.created_at.to_s(:post_time)}

Hopen — Mon, 01 Aug 2011 14:57:43 -0000

@ gfrensley go to the profile site and reenter your info for your wife state the symptoms your wife has and put that in this may reroute you to the right stage group you may contact the mediators of the site and tell them your concerns and they will assist you i hope this helped your in my prayers....Godbless.......An

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

Spockula — Sat, 30 Jul 2011 04:38:22 -0000

Sorry, gfrensley. Sounds hard. No, don't know anyone w/ this d/o. But, Know the 'memory' issue. My heart goes out to you.

'Caring for a spouse' posted by gfrensley @ {post.created_at.to_s(:post_time)}

gfrensley — Wed, 20 Jul 2011 21:27:28 -0000

I am new to this scene. My wife has been diagnosed with Vascular Dementia and AD. Is there anybody out there with this condition? Does this make the illness move much faster. The wife had a stroke about two years ago, but it didn't leave her physically impaired but her memory is just about gone. She cannot even remember her son's name. Her age doesn't help much as she just turned 86. I need to find a support group maybe this would help. Thank you in advance for your help. gfrensley

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

Spockula — Tue, 05 Jul 2011 06:00:30 -0000

Not doing that great. 1st time homeowner, & feeling torn. It's sad. No matter what I decide, I'm screwed. Life is tough. He doesn't have any insight, at all. Doesn't get it. I told him he has to stay at rental, for now. He thinks I'm breaking up w/ him. If I leave him here...I worry, & feel badly. If I bring him to new home, I worry, stressed, & dealing w/ too much. 12 yrs. of this 'stuff' has taken it's toll on me. I look back, & even the last few months, weeks, days, & today. I cannot have this in my home on a daily basis. It's not fair. In his eyes...I'm dumping him. But, I've done all I can. I can't have his illnesses ruining my life, & new home. I love him, & maybe, he can move in, at some point. But, for now...we need to have our own places. I've been through too much. Must think of myself for a change. It's hard. Bad times outweighing good.

'Caring for a spouse' posted by ckh @ {post.created_at.to_s(:post_time)}

ckh — Mon, 04 Jul 2011 05:23:54 -0000

http://insicknessinhealth.blogspot.com/2011/06/when-you-feel-your-partners-pain.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+InSicknessInHealth+%28In+Sickness+and+In+Health%29

Here's a link to a blog called I Sickness & in Health

'Caring for a spouse' posted by ckh @ {post.created_at.to_s(:post_time)}

ckh — Mon, 04 Jul 2011 05:18:42 -0000

just wondering how you're doing Spokula

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

Spockula — Sat, 02 Jul 2011 06:43:03 -0000

Well, He got out of Hosp., today, after a family mtg. Well, he 'forgot' to take meds., a few hrs. after discussion at mtg., had symptoms, smoked, & used wooden table as ashtray, again. He did not retain anything discussed at mtg. The Dr. & Hosp. staff minimized his symptoms, & made me feel like a nagging something. Invalidating. So, they started a new injection, & sent him home, alone...I worked 2nd shift. Like, that's real safe. No phone. I came home to the exact same thing that got him into hosp. to begin with. I'm just screwed, & so is he. SUCKS!

'Caring for a spouse' posted by Caring Community @ {post.created_at.to_s(:post_time)}

Caring Community — Fri, 01 Jul 2011 18:18:05 -0000

Hi everyone, Just a friendly reminder:

The Caring.com Community team is here to help ensure that this community remains a safe and supportive place for all caregivers. Our role includes reviewing forum posts and enforcing the site Terms of Use and Community Code of Conduct.

If you ever have an experience on Caring.com that concerns you, or simply need some assistance with your account, please do not hesitate to get in touch with us: moderators@caring.com. We also appreciate your help in flagging items as inappropriate as you come across posts that may be in violation of the site rules. Thanks!

'Caring for a spouse' posted by Wellspouse @ {post.created_at.to_s(:post_time)}

Wellspouse — Fri, 01 Jul 2011 13:34:11 -0000

Spockula:

Check out Wellspouse.org. There's a moderated online forum there. You are going through some heavy stuff right now. I just want to say, I understand. I have been there before. Support is vital.

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

Spockula — Fri, 01 Jul 2011 06:40:00 -0000

Okay, some of you have similar stories, &/or 'worse'. But, still. Feeling like I'm not even welcome here, sometimes. Well, He's in hospital, day after closing on house. Yea. 'Family' meeting Friday. Through all this, I'm still working, & dealing with many other things. Hoping folks understand. Wished this site would 'relate' to me. I feel, no where to turn. Even the 'professionals' don't get it, &/or, can't help. I'm still torn, & he's still, going to have to stay here, for now. I NEED to care for myself, & enjoy my new home without the stress of his 'stuff'. Either way, I'll feel badly. I'll worry when he's here, alone....& can't 'deal' w/ his illnesses at new place, either. I'm screwed no matter what I do. I appreciate folks trying to give advice,etc. But, there's nothing anyone can say, or do. Life is just very sad, right now. Should be happy. Not fair. Yea, Yea, Yea....life's not fair...but, really? Like....ALWAYS?

'Caring for a spouse' posted by ckh @ {post.created_at.to_s(:post_time)}

ckh — Fri, 01 Jul 2011 03:42:31 -0000

Well said, Christine. Spokula-we really have been there-we really have polished our rose colored glasses. ripped them off, drown ourselves with tears, suffered self loathing, etc. We aren't against you girl--if anything we'd like to make your suffering ( and ours) go away

'Caring for a spouse' posted by cmacp @ {post.created_at.to_s(:post_time)}

cmacp — Fri, 01 Jul 2011 01:21:03 -0000

Spokula; I and the others on this site can match your stories and testimonies. There is NOTHING that you have been through that I and others on this site have not also been through. My husband was thrown 20 feet from equipment at an antique home we were renovating. He was 55 yrs old. I gave him mouth to mouth/CPR while I waited for the country ambulance to arrive. His injured brain was shutting down his vital functions like breathing and heart. When they Medivaced him to the East Carolina Trauma Center, Greenville, NC he still had our car keys in his pocket. I was stuck with our Terrier Sat night in the country. No one around. No transportation. And my husband dying in a hospital I had no way to get to. This is for starters. That was 4 yrs ago. I have advocated for medical help when he had no insurance and no Medicare. I understand your pain and emotional distress. I have driven most of our friends and family away because of my anger and bitterness. We married after his Traumatic brain injury, because his family was trying to take him forcefully away from me. A Disabled relative stuck away in a spare bedroom is worth about 6 or 7 tax deductions/credits. Check it out some time. It's shocking. His 3 well to do siblings were fighting over who would get custody of my husband (before we married). Spokula,- It s-cks, it's not fair, it's unjust. It's horrible. We all know!!!! Don't be mad at me or us. We understand. Christine

'Caring for a spouse' posted by cmacp @ {post.created_at.to_s(:post_time)}

cmacp — Fri, 01 Jul 2011 00:49:17 -0000

Wellspouse;

I know that you have devoted part of your life to assisting the 'wellspouse'. .... There is a huge transition to be negotiated between the loss of the old life, to acknowledgment of the new realities.... After 4 yrs of paying taxes, my husband's professional license fees, and holding onto my husband's old Porsche, I am finally letting go. I go around the house singing Suzie Bogus' song Letting Go. His Porsche I hope to sell for pennies on the dollar tomorrow. Monday, I let the deadline pass for our vacation property to be sold for taxes. I stopped paying his professional license fees this yr after paying for 4 yrs. It's light years from where I am now mentally, to back in 2007 when I squandered endless hours searching for properties to buy in Fla. I was OBSESSED with buying a place for us to live in Fla. I thought he would recover far more than he has. God has a place for each of us to be at a particular time. Trying to force the time and place, just leads to frustration. So, 4 yrs and 3 mos after his TBI, today I paid a $1,000 on the principal of our mortgage. We now have only $4,500 more to pay it off. This year I expect to be mortgage free! I've learned to savor small victories. I am soooo grateful that God did not allow me to force through my plan of buying a new house. I have also been paying off his old business credit card through a hardship repayment program. Should be complete this yr too.

One step at a time. I have a dream where widowed caregivers will get together and live in 4 bdrm homes. Most of us have squandered our savings, and time caring for our spouses. many of us will not be able to live on our own SS. But if 4 of us could pool our resources, we could be a network of modern day Golden Girls. We Baby Boomers need new answers for new economic realities. Cheers

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

Spockula — Thu, 30 Jun 2011 06:20:18 -0000

CMACP....Can't explain. Try to. Illogical! ha ha...Spockula! Hey, Things were going well when the home purchase started. Plus, it's just time to own! A lot of crap happened at this rental, too. I don't like the way you implied I was looking for a place for when he dies or institutionalized. I have kept him out of places, & kept him healthy for years, now. He was even 'dead' one time, & I did CPR, & brought him back! So, screw you! We have been through WAY too much to put on here. I love the man. Yes, it's time to think of myself, for once. Hence, the home. I don't need to explain myself. The professionals don't do squat. I work at a crisis center, yet, when I'm in crisis, or my man's in crisis.....we don't get the help, nor support we need. Another reason I'm so bitter. Plus, his mom/legal guardian is not doing her job. Too much to explain, & shouldn't have to. This site can kiss my butt, too!

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

Spockula — Thu, 30 Jun 2011 06:11:59 -0000

To all of you. I AM a professional, & have been in therapy, too. We are not 'legally' married, but, have been together 12 yrs., & Had a commitment ceremony, & legal name change. Above due to 'the system' making disabled folks unable to marry...lose benefits, & 'working spouse' gets 'stuck'. We had been looking for a home for awhile, now, & he had been doing well. How dare someone ask such a thing? We moved to a rental-duplex 2 yrs. ago due to his on-going issues. Yes, he does have 'ups&downs', but...we had huge problems at rental w/ neighbor/place itself, & thought it was time to live together, again. Plus, the price was right. We're 48 yrs. old. He has Schizophrenia, Emphysema, diabetes, barrett's esphophagus/ulcers, & many other health problems. I feel people are asking too many questions, & being a bit judgemental. He did end up in hospital...but, too late. His Mom has been legal guardian for many yrs. Not doing a good job, either. I have been telling folks all along when he needed help. People don't respond. It has to become a crisis before anything is done. Plus, they're letting him go WAY too soon...like, 2 days inpatient will take care of months of not taking meds, etc. We've been slowly looking at homes for yrs., now. The price/place/time was right....he got worse, for some reason. Trying to quit smoking for the millionth time didn't help. I can't go into all of it here. It's a lost cause. He may have to stay at the rental. I bought a home. I deserve it. He was & can come with me when he can show me he's, at least, trying. Otherwise, he can stay here. I seem to be the only one who really cares, & takes action to help him. Otherwise, he'd just be a forgotten soul. It's sad. Even on here....I don't feel a lot of comfort. This has all taken a real toll on me. Yet, I'm still able to 'carry on'. Bought a home, made it to work, got him into hosp., & did many other things most folks couldn't even deal with. I'm proud of myself.

'Caring for a spouse' posted by Wellspouse @ {post.created_at.to_s(:post_time)}

Wellspouse — Thu, 30 Jun 2011 02:46:59 -0000

cmacp:

It is sad, to see your husband go downhill. It's also sad that Medicaid in NC is not offering what it used to. Eventually the Affordable Care Act will help some with that, but not right now.

Also, it seems to me that Spockula is having an experience of caregiver burnout right now, and when you get to that point, it is hard to make rational decisions, let alone plan ahead. I hope she can find someone to talk to in person...

'Caring for a spouse' posted by cmacp @ {post.created_at.to_s(:post_time)}

cmacp — Wed, 29 Jun 2011 23:33:33 -0000

Hay; yes, my husband is 59. Has severe brain trauma and TBI induced mid level alzheimers. About 2 mos ago, I suspect he had another event. His 3rd. each one is a step down from the previous level. After I ran out of things to sell, I was fortunate to find a job working with disabled children. In his 1st and 2nd level, he threw and broke things constantly,- from our glass stove top to my front teeth. He needs intermediate level care in a center with limited access. However, 9/2009, our State eliminated midlevel care underMedicaid. Now, Medicaid only covers those dying on oxygen, and out patient residential centers (where patients are at risk from other patients). The eliminated mid level care is what most senior citizens entered nursing homes under. That is now gone in NC. It's hard and tough. All I can say is that since my hubby's latest step down, he has become more compliant. The anger and rage comes from remembering what they used to be capable of. Time takes that memory away, and they become compliant. It is so sad.

'Caring for a spouse' posted by cmacp @ {post.created_at.to_s(:post_time)}

cmacp — Wed, 29 Jun 2011 23:19:40 -0000

Spokula; I'm curious as to why you and your spouse decided to buy a new house at this time in your lives? My husband is severly brain injured with mid stage alzheimers. This week, i decided to let our planned retirement house be taken for back taxes. Our life has changed. You've known that your husband is ill for some time now. Are you buying a home so you will have a place to live when he is gone or institutionalized? I can understand that. But to be upset because he is ranting and raving at a time that should be a happy time in your lives,-- well friend, that is illogical. You've known that he is incapable of participating in what would have been a joy in earlier yrs. Please explain.

'Caring for a spouse' posted by ckh @ {post.created_at.to_s(:post_time)}

ckh — Wed, 29 Jun 2011 00:10:18 -0000

Spockula-can you tell us how old you are, what your husband suffers from and how it manifests itself.Are you married--as in why is his Mom a legal guardian. I'm not living vicariously here--I'm just hoping that someone has been there, done that and can help you out.

'Caring for a spouse' posted by Hopen @ {post.created_at.to_s(:post_time)}

Hopen — Wed, 29 Jun 2011 00:00:04 -0000

right now you need to take care of yourself youve come to the right place tofind people that will listen we may not know all the answers but at least will try to direct you to resources that will help read on your not along we may not know each other but we all have been through this sometime or other no one judges here keep coming back read what others have on their plate but if you can do seek someone that can get help your husband dr priest GODBLESS YOUR STEPS FORWARD

'Caring for a spouse' posted by Wellspouse @ {post.created_at.to_s(:post_time)}

Wellspouse — Mon, 27 Jun 2011 14:39:59 -0000

Dear Spockula: This forum or anywhere else on the internet is probably not the ideal place for you to talk over what is going on in your life right now -- you are in crisis, please seek help from a therapist, counselor, clergy person, or social worker... best is to have face-to-face talk with a person trained to be skilled in listening.

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

Spockula — Mon, 27 Jun 2011 05:19:35 -0000

I HAVE asked/demanded help! His mother is his legal guardian...like:'Hello' it's ya freakin' job! I do get out, when I can. But, I work full time in Mental Health. Yes, I'm totally broken, & probably need to be in a hospital, myself, at this time. I'm closing on a house in a few hrs. Yet, he's screaming/yelling/slamming around. I can't take the stress. He needs to be hospitalized. I've been keeping his mother informed, & demanded she get him in somewhere. But, it shouldn't have come to this, at this time. I've been telling folks for months. I'm ready to call the cops. We should be celebrating, right now, 1st time homeowners in a few hrs. Like I need this? I may be living there alone. Very sad. I can't believe how strong I am. But, this is just too much. Come home from working 2nd shift. Closing on a home is stressful enough. WHY NOW? I don't get it. I can't go without sleep. I need to be able to think at closing. Life is just not fair.

'Caring for a spouse' posted by ckh @ {post.created_at.to_s(:post_time)}

ckh — Sun, 26 Jun 2011 20:08:47 -0000

I am Canadian so of course our systems are different but the same. All systems seem to like rules and find the people who need to use them distasteful so I can't really speak to how to deal with the system,. Spockula--are you tired--is it you who needs the tune-up. Do you need three weeks of not even rest but just the chance to get up--go to work, and go to bed with having only yourself to worry about? Maybe you have to write out a family memo-tell them you are almost broken and actually ask them, who will trade homes with me for three weeks and care for----- so I can get myself back together. I didn't do this as I assumed they would all turn me down (and they probably would have)until I just couldn't go any farther. I know everyone tries to tell you to take care of yourself. You thank them and think who the hell has the time? And who will do for mine while I'm doing for me. I know you don't have the money for a vacation or a spa day that so many insist you need--Heck, it's probably an expense in time and money to get your hair done---but break down, hide your pride and ask for help.My thoughts are with you--I am now the true reluctant caregiver and I understand the "no way out" clause of the marriage agreement. My heart goes out to you.

'Caring for a spouse' posted by cmacp @ {post.created_at.to_s(:post_time)}

cmacp — Sun, 26 Jun 2011 05:38:31 -0000

Spokula Your story is repeated millions of times. We understand. Family disappearing is common. My husband is deteriorating from a brain inury 4 yrs ago. can't believe so much time has passed. It feels like his life crisis was just last yr. Family and friends drift away. I work PT in mental health. next week we will loose our vacation house to taxes, where his injury happened. The national economy has gone in the toilet, and now I'm afraid to move close to family in Fla because I need to work. I may not be able to replace my present job in a new State. You mention the 'system'. It has been gutted. Friends say I should divorce, but in our State, divorce requires a yr living apart, and after divorce, my finances would still be stripped for 5 yrs for his care. Last yr I was rejected for the well spouse homestead protection. Medicaid is changing it's rules so only illegal off the books workers can get help.

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

Spockula — Sun, 26 Jun 2011 01:23:06 -0000

ckh. I work for Mental Health, & have done this process, even w/ my Hubby, in past. His Mom is his legal guardian. She came by, today, twice. But, I have been telling her for months that things were worsening, & he needs help. I don't want him to be 'placed'...he has been in past. But, he does need an inpt. stay for a 'tune-up', or stabilization on meds. I'm just so torn. I understand his illness...but, it's still very stressful. Especially, when I work in the field. It's still different when it's your own mate. I'm sure I, already, have both resentment, & guilt over many things. But, I'm sick of 'the system' failing us, too. His family is another entire long story. I'm the only one who's ever 'really' there for him. It shouldn't take a major incident to get her here. Never there when it's a crisis. So disgusted with so many things/people.

Recent Posts in 'Caring for a spouse' | Caring.com

'Caring for a spouse' posted by Hopen @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by gfrensley @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by ckh @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by ckh @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Caring Community @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Wellspouse @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by ckh @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by cmacp @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by cmacp @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Wellspouse @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by cmacp @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by cmacp @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by ckh @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Hopen @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Wellspouse @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by ckh @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by cmacp @ {post.created_at.to_s(:post_time)}

'Caring for a spouse' posted by Spockula @ {post.created_at.to_s(:post_time)}