My husband and I feel so trapped. I'm sad at what our lives have become. How do you cope?

My husband and I just went through almost the same scenario as you describe. You don't say were you're located so not sure how quickly you can get help with medicaid. In our state , if you can show an escalated need you can get help faster. We also had a part-time care giver 5 days a week. Medicaid provided a caregiver a few hours a couple of times a week when Mom was finally approved. As we were told by a social worker that also came in to talk to us, take advantage of the times the caregiver is there. Some of our "dates" were just taking a walk in the fresh air around the neighborhood or going to the grocery store together.

I relate to your anger and frustration as my siblings were supportive vocally, but not close by for physical help. It does seem unfair at the time, but in the end I know she had the best care she could get. Your husband does sound like a saint as I know mine is as he welcomed my Mom with open arms and was in the trenches right there with me.

Most importantly, you need to take care of yourself. If you don't take care of you, you can not take care of Mom or your husband. Make sure you are eating well, getting rest you need (naps if needed), go out into the fresh air and just enjoy nature for a few minutes everyday.

My prayers are with you!

I have been taking care of my parents for almost two years. My mother passed away 40 years ago. My step mom had a stroke three years ago, my dad was taking care of her, but when he had congestive heart failure my sister and I stepped in to care for them. We have three brothers. Has nothing to do with our dad because of our step mom. Step mom has two kids, daughter could care less about her her son texted me maybe once a week she how she is doing. They my dad and step mom are on hospice. My dad 95 and mom 92. My dad is declining now he’s bed ridden. People say I have a load to carry. I tell them, the Lord has done petty much if the caring. If not for the Lord, I probley be a basket case. My dad this pass January said he and mom would come live with me and my husband, who has been so supportive. My sister comes to be with me every six weeks. And stayes for two weeks every time she comes. She is with me now, because dads not doing good. I do have help every day for four hours every morning. And I do go to the store, shopping etc.. during that time. So that’s my outing unless my husband wants to go to a movie or dinner, we ask her could she work so we can go out together. That’s how I cope on a daily basis. But bottom line, My Lord Jesus gives me strength to care for my parents. Good Luck, and hope you find a solution.

I know exactly what you are going through. We are in year 6 with my mom's dementia, with providing almost the last five years with 24/7 care. I am blessed to have sisters who help, but one quit about 2 months ago as she couldn't handle it anymore, and to be honest I resented her at first. My dad was a veteran so mom has been receiving Aid & Attendance that helps to pay caregivers some during weekdays, but her care needs are beginning to be difficult for them to handle. It is very stressful on all of us. I get a few days off each month, and my sweet husband takes me somewhere to just get away, but he is so tired of having a part-time wife. If I'm not there he doesn't sleep well either. It was mom's desire as well as ours to keep her in her home, but we realize the time has come to look into a skilled nursing facility. She no longer knows us and can communicate very little. She can no longer perform the 5 Activities of Daily Living. She has very little assests so I'm in the process of applying for Medicaid for her. She has a Level of Care assessment next week. It is going to be very emotional if/ when she is placed, but I know as loving daughters we've done our best in caring for her, and I know she wouldn't want her care to take a toll on our health and our family relationships. It has been a difficult journey to watch my sweet mom turn into a shell of a person she was. I miss the person she was so much. I never thought I would be feeding my mom and changing her diaper. I look forward to just enjoy being her daughter for her remaining days without the responsibility of being her caregiver.

I will be blunt. You have very few good years ahead of you. Put her in a nursing home and enjoy what little time is left. So she doesn't like it? Too bad. You have done enough. She could OUTLIVE YOU, and will go in a nursing home anyway. You keep this up, and you will be a broken woman with nothing to look forward to except a nursing home for yourself. There is no crown in heaven waiting for you, dear, sacrificing your last few years will not get you anywhere except dead.

Biodoc: I understand you completely! My husband and I were once in your shoes. My late mother lived by herself (she widowed at age 47) in another state 400 miles away from us. She was keeping house-not! She was failing at that. She had numerous health issues and was 94 at TOD. The very wrong decision my husband and I made was to not go on a 25 or a 30th wedding anniversary trip because "what happens if mother gets sick?" Very wrong! Get someone as a respite caregiver and go on a vacation.

In the same boat, they have no money, and wouldn't take care of father in law because of aggressiveness was told he would be put in state facilitie I'm cargiveing them for my wife's family for my wife's sake and because they treated me vary well when my wife and I started dating. But it is hard I took over for the wife as they needed more mussel to lift. I do give you my sympathy. Hospice care helps very little except at bath time.

I feel you are entitled to a life. I realize money is a problem and that may be a blessing in disguise. Please check and see if your mother could be placed somewhere with it being paid by Medicaid. You must not give up your life because of this - you have a right to live while to can. I know this is terribly difficult and emotionally draining but it may be best to consider placing her where she is cared for.

Biodoc,

I cared for my father for 7 years in his home until he died recently at the age of 90 years. I would ask my sibs to help, but they would not (although they did do very well at making sure he did not enter a care facility). I finally started taking college classes online as a way to keep my mind active and interact with the rest of the world. When I started a doctoral program that required me to be away for two weeks twice a year, I researched temporary care facilities and home assistance providers. I went with Visiting Angels who allowed me to get out and do things up to the day he passed away. If he had lived to the next time I had to go away, I was contemplating bringing him with me to the other city and having the Visiting Angels staff in that locale stay with him while I was away. It is a rough situation you are in, but I encourage you to take care of you first.

Biodoc, I have been caring for my DH - 96 to my 66 - and it does get stressful and tiring.

What helps me deal is that some day I might need the help too and I do for him what I pray someone would be willing to do for me. Actually, I pray I won't need the assistance as I have no one to help me now with DH and there won't be anyone I know to take care of me.

My mother used to say that the blessings come in heaven. Well, not much help while we're here on earth.

I think we all just do the best we can. Do I feel trapped? I'm honestly not sure - but when I feel stressed, I try to get some outdoor work done - for me that's mowing. I find mowing to be quite therapeutic as I use a push mower to do about an acre. Takes me a week and then I start again. It give me 40+ minutes to walk, think and just get away from it all.

Bless you and your DH for taking care of your Mother.

I am not going to be much help to you, I am in the same boat except while we were taking care of my mother my husband got sick with cancer and died so now its only me. Sometimes I feel like blaming things on her although I know its not her fault but I feel trapped, too. Not only do I not have the love of my life helping me anymore no one helps me except my daughter and my one sister. I go to work and come home to my second job my mom. To me this is the worst thing I could say but truthfully its the way I feel. This is not the woman who raised me,. but back to you. As I am not helping you I just want you to know you are not alone and we can only do what we can do. So hang in there and try and get someone to help you out a little....I know it's not easy, though.

You have done a great job the bible says honor your father and your mother, your siblings should help your not alone even if they don't want to they should take part in caring for her, remember God loves you and will not give you more than you cant resist, read your bible, pray and look for spiritual help, many blessings

First, I must ask something. Why are you paying for the caregiver and why is she not paying for it out of her money or insurance? 


Uninsured?

Doesn't she have insurance? If not, why not? Don't you know that not having health coverage can get you penalized? Obama put it into law when he was in office that any uninsured people would be financially penalized with a hefty fine if it was found out anyone was uninsured. Are you harboring an uninsured patient who's breaking the law by having no insurance? If so, you don't know that you might not also be in some trouble? I don't know how serious of trouble you can get into but you really shouldn't be harboring someone breaking the law by having no insurance (if this person happens to have no insurance). Being uninsured these days is actually illegal and if she qualifies for Medicaid, you better hurry up and get her on it and fast. What I'd do is actually go in person up to the human services and see if you can speak to a social worker and expedite this and ask for some kind of emergency coverage card where at least she'll have some info should she have to go to the hospital. Just tell the person at the window that you need to speak to a social worker. If they ask why, just explain in as few words as possible that you have a situation that you need resolved now. When you go back to the office, that's when you want to spill the beans and tell your assigned social worker your elder is uninsured and needs emergency Medicaid due to the current situation. Take with you the elders ID, financial statement (I'd go back as far as a year) and report all money and assets in every single account. Another thing I know you'll need is if this elder owns any cars or homes is a copy of the deed's and titles because these may be counted as resources that can be sold and used  forgetting her the care she needs, especially if she's to be placed in a nursing home. If you can't get this elderly patient on Medicaid, then what I would do is either drop her off at the hospital and then go talk to social services who can actually get the ball rolling for you or drop her off at a nursing home and let them handle it because they can also get the ball rolling. They have more clout than the average person believe it or not. You should never have to pay for someone else's care out of your own pocket if your own money is limited. You're probably on Social Security, aren't you? If so then your Social Security was never meant to be spent on anyone but yourself, this is why they give so little to make sure there's not enough wiggle room for no one else to get anything.  That's because your Social Security check is meant for just you and no one else is entitled to it, it's just for you and no one else. Therefore, you should never spend this money on no one else. If Social Security ever found out, you don't know that they might not either cut you back or even cut you off if you can afford to be spending their money that's only meant for you on someone else. Your Social Security check is only meant for your basic needs and nothing else. When visiting the human services, take any and all receipts of every dime you spent on this patient's home health care aid and ask your social worker if you can get a refund, especially if you happen to be on Social Security. It would also be a good idea to call your state bar association and see if you can obtain a lawyer to help you through this. They can hook you up with a lawyer who works on contingency meaning no upfront cost

If covered:

If this patient does have insurance, why is she not getting covered for the care she needs? Have you called the insurance provider and told them the problem? Have you made any effort on your part to at least call the care providers who dispatch the workers and tell them the problem? If not, why not

I don't know your situation other than what you told us here, but if you can put this elder into a facility then I personally would consider doing just that if it would help you to be able to go out and enjoy outings. If this is all that's holding you up then your problem is far easier to solve than what I'm going through. 

I'm not in your position of taking care of anyone right now but I do know what it's like to not be able to go away anywhere. In my current situation, I have lacked transportation and haven't been out of town for more than a year. Therefore, I can't go nowhere either and I'm pretty much stuck at or near home. When you don't have anyone to help you, it can be awfully depressing. However, what I'm doing in my particular situation is just tightening the purse strings and that spending nothing anywhere if I'm not going to get any help that I so desperately need. If I'm not going to be able to get a car loan and no one's going to help me with transportation but no one's getting another dime of my money until I get a car. Right now I'm still waiting for my dad's estate to settle, I'm in the inventory stage right now and also in the process of waiting for the judge to order a judgment against the fraudster who took advantage of my bio dad who had Alzheimer's. I'm sure it'll be a relief to finally get what's mine and get the car I need but right now on top of having no transportation and not being able to go nowhere I'm dealing with legal matters against someone who stole an estate. I may not be taking care of anyone right now, but you're in good company where not being able to go nowhere is understood from a different kind of experience. I know the sadness and depression you must feel right now, I've been going through it for quite a while. The only way it's relieved is to be able to go and the only way to be able to go is to have a reliable vehicle. Having a running vehicle means no more sadness or depression, I clearly understand. Being able to go is very vital and when that's interrupted regardless of the problem, that's when you spiral into sadness and eventually depression so I hear you. The longer you can't go nowhere, the deeper into sadness you spiral until you're downright depressed. This is a process that definitely doesn't happen overnight. This is why no one's getting another dime of my money until I get a car and then I may decide to just keep most of my money to myself from now on and not shop much anymore just because of what I'm going through now and what I've been through. What I may do when I get my car is just continue saving for my next car, just not enjoy much shopping anymore if I'm not going to get no help getting a car and I can't get a car loan because I don't make enough money. If no one's going to help me then no one's getting my business anymore. Pulling the purse strings is how I'm currently dealing with my own experience of not being able to go nowhere. Businesses want to tempt us with all those ads and show us the new products but they don't think of situations like mine nor does anyone offer help. The money I'm saving now will most likely just have to be for maintenance and repair of my car there I'll get from my dad's money once it's recovered. Anything left over after getting a car and getting it on the road is going into my able account and not anyone else's pocket. This is just how it's going to be from now on and I hope this sends every business out there a strong message because they don't really care about us when we hit rock bottom and need help but can't get it. I hope this also encourages others in my situation to also start pulling the purse strings to send a strong message. If too many people start losing money because we stop spending then someone somewhere is going to realize why. Remember, it's us keeping all those businesses open and it's us unknowingly helping others live rich lives while we go without

State home care agencies offer respite for caregivers.Try having an assessment done by a care manager. She may qualify for services such as help with bathing and dressing. Contact your local Area Agency On Aging for info. Respite may involve temporary placement in a NH or AL. This will give you the ability to take a short vacation which you need. Also try caregiver support groups to help you vent . It is as not as hopeless as you think!

Blodoc, I don't think there is an answer. We get caught in a waiting game, dreading something will happen, but knowing that if it doesn't our lives will be frozen forever. It would be nice if your mother had enough money for assisted living or if she qualified for a nursing facility. Would your mother be ill enough to qualify for a nursing facility? Tell us a little more about what help she has to have. Someone may have some suggestions.

We often trivialize what caregivers are going through. We can't just check our parent into a NH like it was a hotel and our parent has no will of their own. We are dealing with a real person who more often than not does not yet qualify for the NH. However, they may not be able to be left alone for long stretches of time. It would be wonderful if all the family pulled together to provide care, but that normally doesn't happen.

Do you think that having respite time away from your mother every few months would help? You and your husband could go on vacations and have time away from the worries. Some of the ALs and NHs in communities may offer respite services. It is something to check into -- maybe it is affordable.

I wish there was a quick fix for what you're going through. I know it can be a waiting game now and it isn't easy.

I share your heartfelt sadness. I only had my 93 year old Mother living with us for 2 years & we were already beginning to have issues. My husband's attitude was negative & resentful. I felt trapped & in the middle. I was snappy with everyone. When my husband starting having health issues (he turns 70 this year) I knew it was time to do something. I was at the hospital for both of them within a month span & was slowly falling apart. I have some moral support, but no physical support because family all lives too far away. I made the heart wrenching decision to help Mom find an apt. in assisted living. I don't know what your financial resources are, but if she has the money I highly recommend assisted living. If no funds, then medicaid will help cover in some homes, not all. My Mom has been in AL now for about 4 months & for the first time in 2 years she is healthier, happier & more content than while she was at my home. She has community & feels needed with the other residents. I can now say it was the best decision that we made together, but not without many tears & heart wrenching emotions. I still get sad when I have to leave her, but the peace of mind & ability to go where we want, when we want was so needed. It may be too late for us because of my husbands declining health, but if you are both healthy, than I highly recommend you make the move now. She will adjust at some point, especially if you research & find a good AL. Best wishes & heartfelt empathy!

Long term/short term...In your situation, short term gets my vote....Have a paid person with good references come in round the clock for a week..You and hubs get away for respite...

When you get back, attack the long term: Medicaid seems to me the way to go...My experience is that you can rely upon the people at your county health and human services to steer you right.....A qualified elder care attorney would be nice, but the fees are steep in my experience...

Don't delay or seek agreement from syblings, or "convince" mom that she might go to a nursing home...Just act...

Grace + Peace,

Bob

Once you find a facility she qualifies for and you have done your homework by researching the medicare.gov overviews, the facility will help you fill out the needed paperwork for Medicaid for long term care. I took care of my mother in my home 5 years, until a fall. When the level of care you can safely provide changes, you have to move her to a facility. You must accept this is your only chance at a life with your husband. You have done your best. It's ok. Move her to a facility now.

Definitely time to search for a care facility and move mom in. You sound like you need a vacation from all that responsibility. My goodness...you've done plenty...you deserve a break! Search for a home for mom, apply for Medicaid if necessary to cover the costs. Take steps to regain your life. Surely your mom would want you to be happy...
Best of luck to you!

If you don’t make changes now it will be too late for you to enjoy your life. Your mother will probably qualify for medicaid and she should be in a nursing facility. Place her close to your home and visit frequently, even daily. Your husband must be a saint!

How do others do it? They usually put mom into assisted living facilities or nursing homes. You have been a good DIL for your hard work with MIL. Perhaps it's time for MIL to move?

Medicaid. Far from perfect but it does help the caregivers cope. It can pay for some in-home care, or an appropriate care center. It covers medications and supplies. It decreases the financial struggle.

Life is not fair. Being angry and sad about that is normal, but not very much fun. You can hubby need to have more time to yourselves. You both need to get away, separately and together, from this stressful situation. More in-home help could enable that. Not as good as a two week vacation, but better than feeling trapped.

You have given your mother six years of in-home care. What a wonderful gift! In addition to being angry and sad I hope you and hubby are both very proud. But you don't have to go on giving at this level forever. Don't ever consider abandoning your mother. Always continue to be her advocate and see that she gets excellent care. But it is OK if she gets that care somewhere else and you visit her often as her loving daughter.

I also highly recommend finding and joining a support group for caregivers of elders.

Her resources, not yours, should be paying for caregivers.

Do you have a caregiving contract with her?

Have you gotten her qualified for Medicaid?