Being a caregiver has taken a very big toll on me and my health.

My heart goes out to all of you. My dad will not be coming home. He will be placed in care facility and mom also. Please, do a very intensive background check on who ever you decide to care for your aunt. We have had home support that are nothing but a bunch of thieves and have stolen a lot of money from my dad briefcase that was even hid away. Please be careful.
Hugs to all.......

One solution could be to let someone (a caregiver) live there rent free, and they would do some or most of the caring for your aunt. If you are interested, it is best to do a background check on the person.

I am sooo sorry, won't write long now. My husband is 73 and also has esophageal cancer....my nerves are shot...ask about AIM a new program for pallative care..it is a branch off of Hospice..we were accepted immediately and my doctor won't give the order, you get help to get away, the PA comes to your house....all of that for free, probably someone has suggested that. You don't have to be terminally ill to get into Hospice! We were accepted in that too...Dr. won't sign orders...hope you write back, I am soooo lonely, I hope I find you peoples answers on this site, I don't know too much about it. Be well and we doooo care!

Most states there are home and community waivers or programs with similar (or different) names, bascially under Medicaid, that are designed to allow people to stay in their homes. Area Agency on Aging is the lead agency where my Mom was. This is hard, but you know, if there is no help in the situation, even a person doing CPR is supposed to stop when they are too exhausted to continue.

Kthin, there is NOTHING wrong with treating an angry depression with Zoloft. I think there is something wrong with people who won't even try meds that might help because of a philsophical objection. Chloe'sGram, my husband once did something like that to me, and your post brought it back to me like it was yesterday. Twice, he would not let me take a much needed break without a phone-call induced guilt trip because he got nervous about some child care duty that he was perfectly capable of; it hurt terribly to be used that way, and it really cost me as I dropped out of a very helpful support group I was in because of it...but eventually we mended the relationship and he learned to do things without me when it was needed. Alternate caregivers should be pretty familiar with the phenomenon, you will always be indispensable, but not too indispensable to ever have a break. Even presidents take vacations, not that they won't drop everything and be back at a moment's notice in a REAL crisis...but your hubby could have held on while you got the groceries and then maybe appreciated what you go through all the time that much more. :-) Just my $0.02.

Yes, I totally agree that care giving is the hardest job in the world. My dad will finally be coming home from the hospital after 2 months. My mom has been by herself, which she really should not be alone. But due to circumstances it must be that way.
Dad informed her the other night on the phone that they will have to sell there house to afford assisted living. She is beside herself with anxiety. They have lived there for 50 years. How in the hell do you move someone who is 94 to a new location without stressing them to the point of hospitalization? God help us all.....

Caregiving is the absolute hardest thing you will ever do. I've been in the midst of caring for my mom, who is immobile and in a nursing home (not a very good one in my opinion but my older sister is the POV so I have to bow to her wishes) and my husband, daughter and I live with my 93 year old dad, who suffers from dementia and has absolutely no short term memory. The economic crisis has hit us, like so many people hard as hell, and many nights we subsist on mac and cheese or cold cereal. I'm not complaining; I have a roof over my head. But yes, the worry is relentless. I've found my short term memory is horrible because of the unending stress and I have a most unsympathetic husband who is interested only in sex. Sex is the last thing from my mind. Try to remember this: if it weren't for you, this person would have NO ONE. I am just starting to realize that there probably won't be anyone to take care of me as I age and I hope I go quickly. My sister is an unsympathic witch, my husband lazy and our daughter is off on her own at college. Life is never easy but try to take it one day at a time. And realize you are not alone! Many, many, many people empathize with you. Try to look upon it as an adventure. And for god's sake, try not to worry about the house! The four of us are crammed into a time brick ranch with my mom's furniture, our furniture and junk everywhere. I throw things out when I can, and block out the rest. You need to take it easy on yourself and find some simple enjoyment: read, or walk or listen to music, or check out movies from the library....these are things I do and they cost not a cent. BE GOOD TO YOURSELF! Try to decompress and if you can't, get help and perhaps some anti-anxiety meds -- which, oh god, somebody will now raise a huge stink that I suggested medication. Well, I take medication and I'd be a basket case without it. To each his own. Know you are loved. And thought of, especially by me!

Being a caregiver is a serious commitment and can definitley take a tole on anyone...

Hi, I feel your pain and frustration. Do you or your Aunt belong to a local church?
Some have a handy man group that may come and do what they can for her.
Sometimes the youth help too with painting, or yardwork.

Check with your local chamber of commerce, town and see if they offer any help or know of any organizations who help the elderly with home repairs and so on.

You have to take care of yourself. Your Aunt doesn't have any other family or children? It is nice you have stepped up to help her.

Can you get a bench that goes across the tub that is what we got for my MIL so she could sit down and swing her legs over the tub and wash herself up....

You may not have a choice about a nursing home, be sure all her affairs are in order. Check it out carefully, ask questions and check on her often.

My MIL had a total knee replacement and went from the hospital to a rehad facility and died six days later..... of double pnemonia, sepsis and heart failure, it was devastating since we saw her the night before and she seemed fine.

I hope you find some relief, look for caregivers support classes, they are usually free, this website is great just to express yourself and be able to vent.

Remember take care of yourself.... if your not there who will be for your Aunt?

not longer frustrated2012

Some good advice has been given here. Definitely contact your local agency on aging. I believe they offer case management, either a social worker or a nurse perhaps that can inform you of resources and maybe what needs to happen for you to get some help.

I'm sickened to read the horrible experiences people have underwent here! My mom is in a nursing home; it's not the greatest in the world but my sister, husband and I go there as often as we can (4-5 week) and we get IN THEIR FACES when something goes wrong. My mom suffered two outbreaks of scabies and the 2nd time we discovered this, on Christmas Day, we went ballistic. Gee....it really seemed to make a difference! My mom was isolated into her own room while everything was sterilized. I went there today and they made a point of showing me alllllllllllllll the improvements they had made. My dad, 92, lives in his own home and my husband, daughter and I have given up our home to move in with him--his whole world turned upside down with mom's decline & we couldn't afford our home's mortgage anyway--and he is doing OK! The additional company is working wonders for him. He has issues with refusing to bathe, change his clothes as often as he should, etc., but we pretty much let him be. After all, at 92 he can be a little curmudgeonly. May all of you experience good things despite the evil that exists in this world. I truly believe there is a special place in hell for those who abuse others--esp. children and the elderly.

In reference to suggestions that you use home care agencies, etc - be very careful with companies in this line of business. Certain home care agencies, at least here in South Bend, IN, hire anybody with a pulse that can sit upright in a chair. I had terrible experiences with them sending thieves and odd young women who seemed not quite "with it" - spent the whole time on the couch eating and talking on their cellphones while my aunt staggered around the house without her walker. (They didn't know I was watching them). When confronted and reminded that all I had asked was that they not let her walk unassisted, they all said the same thing, "It was just the one time." There was another in-home company that didn't return my phone calls and then one day called, did not identify itself, and asked, "So, what do you want?" I figure if they're that unprofessional out of the gate, what kind of "caregivers" would they send to my home. I don't use any of these companies at all. It may be different where you are, but be careful. Also, as a nurse, I worked once at a local nursing home, one with a 'caring' reputation -- I lasted 6 days, then quit to file a complaint with the state because of all the abuse, theft, and lack of care I witnessed. The place got shut down, all the nurses and CNAs were fired, management was fired -- impressive, eh? Big deal, it was just a little vacation for them. A week later they re-opened under another name and everybody was rehired. Business as usual. I wouldn't put my aunt in a nursing home in Indiana no for any reason. I hope it's better where you are -- just do your homework. There is always a way but you have to be creative.

Try the help line for services in your area for the aged. I also so found quite a few organization through my church. They are affiliated with an organization called, Give. ( They load medical furniture and supplies to the needy) and then when you are done with them you give it back to them for the next needy person. (No cost what so ever).. Check with your local city bus transportation. Dayton has a program through RTA that's call Project Mobility. My mother is wheelchair bound and the will send a handicap bus to your home and take her (and pick her up) any where she wants to go for $3.50 one way. That is a great help cos' I can't get her in the car and she wants to go to church or shopping, etc. The local senior citizen community has a list of about 100 different agencies and organizations that are willing and ready to help the senior citizens in need. Do some research in your area. They are out there, you just have to find out where. And usually, I find, people are so willing to help you find these people. Just ask. That is not going to answer all your needs, but hopefully will help.

Department of Aging
Local Chapter of Alzheimers assoc. (they have support groups)
They also have lists of good caregivers that can come in and give you a break for short amounts of time.
God Bless you and your family for what you and all the others here are doing for a aging loved one. Let us Pray: Lord, please give us the strength, patience, kindness and love we need every moment of the day and nite to help our aging loved ones as long as we can before we have to pass them onto a nursing home.
Thank you Lord for loving all of us equally, whether we know you , love you, or have never heard your word. God Bless each and everyone one in the world who is dealing with this issue of caregiving for a loved one. Lord, we need your love and your spirit to help us each day and thank you for your everlasting word.

Your loved one may have too much money for Medicaid assistance; however, there is what is called a "spend down" where your loved one has to spend down assets in order to qualify for Medicaid and this spend down comes in the care or your loved one, not family spending the money on themselves. If in a nursing home, they will take what money the loved one has to pay for the nursing home and then after that she/he can apply for Medicaid. This is what we had to do with my mother. I would check into it and if you can afford, an elder law attorney is the way to go to get this information as they know so much about this Medicaid process. It can be very confusing, so that would be one of the things I would recommend.

I read on this forum once that you do not kill the healthy chicken to make soup for the sick chicken. It sounds a little bit harsh at first but think about it.

I also wanted to add that hospice will send out nurses every week to check on her, and depending on how much care she needs they schedule how many times a week would be best to see her. They send out nursing assistants to bathe her too. I am able to help with bathing, but it sure is nice to have a break from it now and then.

Hospice is definately a huge help. My MIL is receiving hospice services, and they actually bring us all the supplies we need. They even brought a bed in for her that helps with her circulation. She is bedridden, so this is a God send! They also supply diapers, wipes, and other supplies like that. Another thing they do is send out people to help with emotional support for not only the patient but their family too. They will sit down and listen and offer any advice you may need. Volunteers will also come in and sit with your loved one while you go out and get a break. I would recommend hospice services. They have been a big help to us. Also, there may be caregiving agencies in your area who will send out caregivers to help you in your home. We have Comfort Keepers where I live in Arizona. I'm not sure how the pay works with them, but Medicare may be able to help with some of the expenses. I hope this helps you. God bless you for all you are doing for your aunt! It is a journey with a lot of ups and downs, but she is blessed to have you and your fiance' looking out for her and taking care of her.

I will pray for you. I am experiencing the same-dizzy spells, nausea and heeadaches. Th ethought that I might pass before my mother has entered my mind, too. Seek help wherever possible or probable.

Hospice care can be ordered by her primary doctor. From you you've written here, your Aunt will definitely qualify for this. Once she's on the program, speak to the case worker on her case and explain your financial need. Sometimes these companies have foundations that if you qualify can get a one-time financial help. I agree that you need to care for yourself because like me, if I wasn't able to care for my Mother while she was still here, then who would? I too, was unemployed, but there are local resources that may be able to help with the utility payments. Call the water, electric companies and ask what type of support they have. If they don't, they will send you somewhere that may be able to help. I'm sure your mother is on Medicare; if so, I understand they have meals that they can deliver, they may also be able to help with "mobility" items such as a wheelchair, bathing seat. Try to speak to her mortgage company and ask if there's anything they can do to lessen the payments. Look at your Area Agency on Aging as they have many resources there and go to www.go.benefits.gov; they also have some insights as to some support. I hope you find the help you need, it's hard enough being a caregiver without also having to deal with financial hassles. My heart goes out to you. Please take care fo yourself. By the way, an important point, I used to do all the things you mentioned for my Mother, but one thing I neglected to do and is extremely important: Make sure to care for her oral hygiene after every medication she takes or eats or drinks (specially citric juices). If not, this could cause something called "thrush" and I saw my mother go through this and it is not something anyone should go through. So please--- don't forget the oral hygiene. Good luck with everything.

Best wishes to you but please consider home health assistance and any assistive products that would keep you and your aunt from being injured. Average SNF costs are over $90000/yr and that could buy people a lot of home help. Plus I would not wish a nursing home on anyone- my father was in one for three years (passed away last night) and there was no quality of life there. I have expertise in mobility products and would love to suggest items to help you- AbleData and even this site has products listed- and I just stumbled across another great product in California that could help many people here. Love to help but you need to find me.

If you hire someone to help out please run a very thorough security check on them. Do this even if you got a recommendation from a reputable company. Turns out you can't be too careful in the area of elder care. My mother became ill and I was able to get a recommendation for helpers. We hired these helpers for her and within seven days they had killed her and taken her computer and accessed her online bank accounts and credit card. They even took items from the house.
The scariest part of this scenario is I was absent for only 5 days! Five days and they snuffed her and ripped her off big time. Police are investigating this woman as a serial killer since she has been taking dead bodies into a funeral home since 2003 when she got out of prison. Yes, prison for theft and elder abuse. Gets out and goes right back to her trade of ripping off the vulnerable.
No matter what you do, be very careful who you bring into your home to help out.

Tosimons: I'm so sorry you are going through all this. I feel for you! If you're not yet ready to place your aunt in a facility, do consider asking her primary doctor for a referral for Hospice in-home care. I have them for my 92 year old husband with advanced Azheimer's, and although I am still his primary caregiver (and often feel worn out) I appreciate the feeling of having a Hospice team as a support system. The nurse visits once a week (or more often if needed), the social worker comes twice a month, and is wonderful at making suggestions and then implementing them on your behalf (for example, ordering a hospital bed to be delivered (the bed is a big help), and arranging a 5-day respite care for the patient, to give the caregiver a much needed break. Hospice provides the transportation to and from the facility, too. The respite care is available only once every 90 days, but does help restore the caregiver's perspective and energy. Another person on the team is an aide, who comes twice a week to shower my husband, and shave and dress him. I suggest that you talk to someone at a Hospice in your area. They could send someone to your home to evaluate your situation and explain their services. Please let us know if anything changes for the better for you. We care!

Dept. of Social Services in your community or church may offer some help. Was your aunt in the military or if she was married, was her husband a veteran? If so, VA could help. Have you considered Meals on Wheels? That could at least relieve you from cooking some meals, maybe save you a little time. You could call the social service department at your local hospital, they may have some suggestions. Does she have insurance that would cover some home health care? Sorry, I don't have any more suggestions for you.

It is all fine and dandy to care for your elderly relative, BUT... The time will come when you will have to decide what is going to be best for your aunt and you. You will be faced with no other alternative but to have her placed in extended care. If you don't care for yourself you can't care for them. I was told by a manager of a home support company that you have to put yourself ahead of them. It sounds like your aunt should have been placed a long time ago. It is VERY true that care givers pass away sooner than those they area caring for. It is stress, anxiety, financial worries and the list goes on. It is very honourable of you for caring for her the way you have but it is time for some changes. I am also a care giver for my parents. My mother is 94 and my dad is 86. My mother is a care givers nightmare. She is difficult, bossy, nasty, demanding etc. She would give anyone an aneurysm, just trying to cope with her. My dad is different and a lot more manageable. I live out of town and travel over a 100 miles to their home once a week to do errands for them. I am letting them do as much for themselves as possible before huge changes have to be made. I am an only child and I am having health issues trying to keep up with my job, demanding parents and keeping up my own home. I have tried to explain to my mother that I am only one person and can't be at her disposal at any time she thinks I should be. She is also wheel chair confined at her own doing. But that is another story. Please get help if you are going to continue caring for your aunt or have her placed.

Contact your local Council on Aging. They can give assistance in finding help...but I agree - at some point you need to consider your health and look at placing your Aunt in a nursing home. From experience with my mom, who was recently in a home for some rehab...your Aunt will need you as her advocate to make sure she gets the care and services she needs.

There seem to be some good suggestions for you to consider...I am so sorry for your struggles. Caregiving is a huge endeavor. After multiple falls with my own mother who recently passed away, we pursued a local Hospice provider for palliative care. Many people associate Hospice with cancer or final stages of death...this is further from the truth. The Hospice was the angel I was looking for. I'm sure it has to do with the primary diagnosis...but if you ruled it out without investigating, I urge you to contact them. Their sole purpose is to help people find quality of life in their struggles with illness so that they can remain at home. My mother was extremely happy that we got them involved and loved all the attention that I was too tired to provide. In the end, after months of decline, they were there for me as well. I hope you find hope in the answers given and find encouragement for yourselves in this task.

Shortly after my then 92 yr old aunt came to live with me, I started experiencing dizzy spells that got worse and worse until I was nauseous all the time and actually falling down. My bp went sky high and my nerves were shot -- and she's not even that hard to take care of! I did some research and found the sentence that changed my life: "Frequently caregivers die before the person they are taking care of." Wow. Also, what use would I be to my aunt if I were incapacitated or worse, dead? As a nurse, I am already familiar with the tendency to ignore our own health as we care for others. (There's a nursing book on the topic, called I'm Dying to Take Care of You). I had to do some hard thinking and what I decided was that while I love my aunt and will do everything I can for her, I am not obligated to sacrifice my life for hers. She's had her life, I've still got things I have to do. I quit working to be available for her, but I cannot quit living in order to take care of her. So. I got educated. You have to read the books that are out there -- the best one, in my opinion, is Gail Sheehey's Passages for Caregivers. She writes that we have to remember that the person we are taking care of is on the path to death, and we go with them as far as we can, but we must stay on the path of life. That idea is a game changer. I put my aunt in an adult day care 2 days a week. I do yoga daily, I go to zumba 3 times weekly. I put her in a respite care home one weekend a month (around here, South Bend, IN, that costs $125/night) where she gets bathed, nails done and I get a much needed break. You can put up with a lot for 3 weeks if you know there's a nice long indulge-yourself weekend coming up! Taking care of the elderly is not for the weak! You're going into a battle and you have to be mentally as well as physically tough. Finally, I was watching a great documentary about a horse trainer, Buck, and there was an interview with his foster mother who'd raised over 20 boys. Her philosophy,which now hangs on my refrigerator, is "Blessed are the flexible for they shall bend and not break." Evaluate the experiences of those who write on websites like this one and grab on to whatever resonates for you. But do not sacrifice your self, your life, or your health. No one is called to do that. Hugs! Margie (p.s. I'm now in my 3rd year of taking care of my aunt and we are both very happy. She has a social life and a sense of being useful and that makes things a lot easier).

Try your county Dept. of Health and Human Resources office. They offer different programs for help and can direct you in the right direction. My heart goes out to you, because I am experiencing the same thing with my Mom. No one knows until they walk in your shoes just what you are going through. I am totally exhausted and in our house (Mom lives with us) if you set down, you automatically fall asleep. And, when you do, Mom proceeds to wake you up! With me, I set down in the recliner and I'm gone and she watches me for a little bit and then comes over and grabs my foot and says "are you OK" or "are you asleep?" My husband was setting with her until I went to the store the other day and he dozed off during a football game he was watching. What did she do? She woke him up and told him the cat needed food cause she was looking in her bowl and then tried to give him the newspaper, piece by piece and insisted he read it!! He started sending me texts and I knew the going was getting rough, so I headed back home with NO groceries. This is getting to be an "all the time" thing and the only person that she wants with her NON-stop is ME! I have just lost interest in everything, housework, laundry, bill paying, fixing myself up (because when I do she suspects that I am going somewhere and I start getting the pout and snub!) Any suggestions? I have no siblings and as far as people (organizations) to help out, that is a NO NO, they couldn't handle it either because she would aggrevate them to death wanting to know where I was or when I was coming back. I know there aren't many choices left but any suggestions would be appreciated. Losimon, I wish you the best and hope you find an answer, also. Some days I wonder how I make it from day to day from the stress. My best to you!

I'm sorry to say, but it's time to start looking at alternatives for aunt's care. It's all fine and good to want to install gadgets to help such as the ramp, means she is probably in a wheel chair so all entry doors must be at least 36" wide.......a lift, takes a lot of room to maneuver one of those......safety rails to keep her steady when walking, so they would be installed on every wall in every room.......a walk-in tub, they are great inventions for the elderly or others with handicaps. I'm not trying to be totally negative but sometimes the care becomes too much financially, physically, mentally and it's time to think of alternatives. You have taken care of aunt for 2 years, your health and the health of your fiance are both suffering. Aunt is not going to get better and if you continue you will not get better either without some type of intervention. If you have the financial means for gadgets, then use that money instead on home health so that someone else can do the lifting and turning and bathing. And in the meantime, call your local Adult Protective services and explain your need. You may not want to put aunt in a nursing home, but sometimes you have to think about what is best for her care. When it is too much for you to do then it's time to find a place that can give her that extra help or hire someone who can. We had to do that with my mil.....we built her a house complete with wide doors, just in case, a handicap tub, a lift chair, access to use a cane, a walker, no stairs and 2 weekly care givers and she still ended up being placed in a home because the physical care was more than I and they could continue doing. And she is doing great now. I'm feeling better but am still a huge part of her care. We may not want to do the alternative, but there comes a time when we have no choice. Good luck!

No, I don't have any answers. I wish I did. All I can say is GET SUPPORT, as much and as often as possible. It isn't easy, because no one is forthcoming in offering it, so I have simply taken it upon myself to call people and tell them what I need. It is surprising how willing people are to help when you present them with your scenario in a very matter-of-factly way, with no self-pity or drama. I also highly recommend therapy for all caregivers and the old bugaboo "I don't have time for it", doesn't wash, because you will be dead before them if you don't get it. It could simply mean having someone be with your loved one for a hour or two once a week or once every other week while you go out for a coffee with a friend or to the library to decompress. I care for my 89 year old mom in a nursing home and live with my 92 year old dad in his home; each day is a mixed bag as far as their moods; dad we put on Zololft because he was becoming increasingly combative, nasty and frightening to my daughter. He'd also locked us out of his house twice. The paramedics came and told him calmly that he had to realize he needed our care and that his combative behavior was detremental. 25 mg. of Zoloft and he's much better. Yes, I know jillion people out there will tell me that I'm "Using the medication as a crutch" but these are people who have never, ever had to deal with mental health issues--my family is overrun with them, from two bipolar aunts, myself a major depressive and god knows how many others in the closet, terrified people will know. Mental illness is the last stigma. There are meds and therapy out there that can help enormously. As for an aunt that is not very mobile you truly need to look into either help at home or putting her in a nursing home. It torn my heart apart to put my mom in a nursing home a year ago but there was no other way. You do what you have to do. DEMAND others help you, but do it in a matter-of-fact way, and look into assisted living, or at-home care. And may you know many bright moments! Believe it or not, guardian angels are watching out for you once you begin to take charge of your problems.