” Do you feel like you’re doing it all? Do you spend most of your time and energycaring for your parent while your siblings continue to take vacations, sleep late on the week-ends and pursue personal interests? Are you sacrificing your own health and sanity to be a caregiver while your brother, sister, spouse or other family members rarely lift a finger to help? Are you sick of going it alone?” – a quote from The Caregiver’s Survival Handbook
In less than 2 weeks, I am planning to attend Camp ReCreation in Orange County, a camp for developmentally disabled “kids”/adults. My daughter, Katie and her great friend, Meghan are co-directors of this camp and I will be serving as one of their camp nurses. It was one of the scariest experiences that I attempted but turned out to be incredibly rewarding. You cannot attend this camp without coming away with a whole new attitude on life. This is an experience I don’t want to miss, especially because it involves both my kids (my son AND his girlfriend will be camp counselors) .
Anyway….while I’m away, I need someone to take over care for my father as he requires medications, oxygen and due to his dementia, cannot be left alone . I was hoping for family support but have not received it. One sister cannot do it because it will cost her $30.00 a day to have someone care for her cockatoo while she is away. One sister has not even telephoned my father for over a year, so her help is out of the question. My mother (who is still married to my father) is afraid of flying (and probably would decline even if she were not). SIGH
My only solution is to hire his respite worker (because he is familiar with him) at $100 a day, hire a nurse to come out to administer medications twice a day at a cost of approx $240.00 a day. I’ll need to provide food for the respite care worker (as well as my father, of course.) The daily cost of his care will be approximately $375 per day. I’m not quite sure who is expected to pay for this care because I receive a monthly salary from my father’s estate to care for him (which is certainly not equivalent to the amount it will cost to care for him while I am away).
Another possibility is to place him in an assisted living facility for the time I’m away but this will only upset him, increase his dementia and cause me to worry the whole time I’m gone – not worth it.
In the 4 years that I’ve cared for him, I’ve never taken a vacation. Care giving is a full time job; one would think that it came with vacations but we all know that it doesn’t.
If I had it to do over again and if I knew that I was going to end up the sole care giver, I would have done things differently from the start. Even though I think my family is more disfunctional than most, I think there are things that could have been done. If you have family, there are things that you can do now to prevent yourself from “going it alone”.
First of all, call a family meeting. If your family is spread throughout the country (or world), try to have a conference call. Do this as soon as possible after you become aware that your parent or loved one needs help. If you don’t, then your family will get used to you handling the entire care giving process yourself. They may also think that you don’t want their help.
In the meeting, set an agenda, set rules, give everyone time to talk and be specific about what you need. Avoid saying “I wish you would help”. Instead say, here is what needs to be done; here’s what I need; here’s when I need it.
If your loved one needs limited care, consider having one of your grown children stay with him/her. You know the old saying: grandchildren and grandparents have a common enemy (you).
Set a calendar and fill in all the slots where you will need help. This will include weekly appointments, senior discounted shopping days, your own family vacation, your sister’s reunion, etc. Then send out the calendar for the upcoming month to each family member so that they will be aware of when they are needed.
If you feel that you need help with your family meeting, there are geriatric care managers located throughout the country who will help your family to explore possible future needs and choices. If you feel that your family needs MORE than a care manager, there are now eldercare mediators who specialize in dealing with families who have conflicts arising from eldercare needs. This seems to be an up and coming (and much needed) specialty. You may not be able to find an eldercare mediator in every state but you might start with a search over the internet. If you ever need one, don’t hesitate to contact me; I have a few names.
Some siblings just won’t and DON’T help. If you have tried everything or if you feel your sibling/family relationships are beyoned repair, just need to let it go and find a different solution. You’re not going to be able to change the situation and it’s only going to cause you more stress. In my case, it’s absolutley no use asking for help from my middle sister.
Sometimes siblings and family members who refuse to help have a good reason for doing so and it may be one that is unbeknownst to you. It may be anything from believing that your care recipient belongs in a nursing home instead of at home, to having been verbally abused by that parent as a child. We don’t know; we can’t judge; we must just do our best.
When we cannot count on our family for help, we must learn to utilize professionals. When the costs are prohibitive, there are certain programs available from your local Area Agency on Aging that provide respite hours including overnight hours.
You might also speak to an elderlaw attorney to determine if funds from your care recipient (if there are some available) might be used for respite care, because if you cannot take care of yourself, you will not able to take care of your parent or loved one effectively.
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Alas, I’ve been the sole caregiver for 10 years, and my siblings and other family members just simply refuse to help out. I don’t even know how to have “fun” anymore outside of the joy my disabled mom gives me and the little silver linings I create for myself out of the simplest tasks of living. I love her beyond words, but it sure isn’t fair that our so-called family abandoned us the minute Mom fell ill. Thanks for this blog post. Sounds like your family is one that is just about as dysfunctional as mine.
The tips on how to handle this are very helpful. The dilemma you have trying to get help from family members is all too real. When my late husband needed full-time care at the age of 33, I decided a nursing home was the best bet. While many people offered to help in a home setting, I knew it would not work out. All of our siblings had young families. While the nursing home setting was less than ideal, it unfortunately was the only solution for us.
I hope you enjoy the camp experience!
When I read this: I thought you had stepped into my life…once, my sister had an excuse of…her 28 year old son had a stomach flu and she had to take care of him, and that was just to take them to a Dr.’s appt. I have almost given up on getting a weekend off with my husband, which is causing a strain. But, as bad as it sounds…I found comfort in knowing that its not just MY siblings that are idiots.
My three sisters and I are all over 60 now. I have been sole caregiver for my mother, who has mid+ Alz. for 7.5 years. I have not had a “vacation” since the Feb before the Iraq war. By vacation, I mean I have not had one overnight off in all that time. (Mom does attend a sr daycare program 4-5 x week, though, but otherwise I have to be with her 24/7.). Just last summer, one of the sisters emailed cheerily, “So how are you all doing?” I emailed back YELLING, “I have been abandoned by you three alone with YOUR mother, and none of you ever offer to help…and you have the GALL to ask ‘how’s it going?’ Wow, she got struck by guilt and came around. The others are also involved in financial elder abuse, and have not been made to pay it back. This abuse brought the county down on MY head, and they stuck me with her care 24/7, always promising better respite, but not delivering.
The maddening thing about this is that these deadbeats CAN get away with it. They inherit just as equally, and they can bitch about you to authorities and get you in trouble. They can insinuate financial abuse. I keep waiting for someone in gov, the law, someone, to take action to protect us, but nobody does. What we do is considered a “gift,” so shut up and go away. Oh, how did the author manage to get paid to care for her father? It was with great difficulty that the county managed to get me $10 DAY. After 7.5 years of this, you can kiss my teeth goodbye.
Carol,
This is one of the reasons I advocate for “caregiving contracts”. A care giving contract is written up by a lawyer representing (in your case) your mother. Funds are made available to you for the purpose of caregiving (as in a monthly salary). The funds would come out of your mother’s money and the contract would state the exact things that would be expected of you in order to receive these funds. It’s not that expensive to have a contract written by an attorney specializing in elder law.
Caregiving contracts are good because Medicaid accepts the money as a legitimate expense and also because it decreases fights between the siblings. The court mandates the expense and also siblings cannot accuse you of using up all your mother’s money BECAUSE you are required to submit an exact accounting of her funds to the court each year.
Sometimes care recipients state that they are going to leave the child who cared for them an additional amount of money in their will, but generally there is no money left by the time the parent dies and really, the money is needed before then. Also, siblings can contest the will.
Elders who have planned for their retirement understand that the funds they put away were to take care of them in their elder years and when you use a care contract, this is exactly what is happening.
In this case, it was too late. Because of financial elder abuse by sisters that I reported, affairs taken over by county conservatorship, and they FINALLY deemed that I would be allowed to live here rent free, get food and ten dollars a day. I drive Mom’s car, so insurance is taken care of. When my mother might have been in some sort of shape to decide such a thing with her full mind, she didn’t have enough $ to pay me. By the time the rev mortgage was set up, the county was on board protecting her assets. Everything is about protecting HER and making sure SHE has funds to care for her throughout her life…but at my expense.
Good advice otherwise, for sane people. With this family, if there had been such an agreement, the sisters would have been furious, cause when they were freeloading here, they would have loved to be paid TOO. They think I should pay rent.
When I complained about “my life” to the Public Guardian, she said “you are doing a great job caring for your mother. You should be proud. You will gain good karma.”
I realized I am giving you a “problem” which in my case there may be no solution. If I keep restating the problem over and over in different ways, and don’t take any advice, it is called “bear trapping.” It used to drive my therapist friend crazy, and he would not stand for it with his clients. They wanted an ally in their sad and furious story, not help to get out of it or to change themselves. They wanted an audience, agreement. He had a special place in hell reserved just for them. Sure we’ve all run into these folks…or worse, been one.
Besides the obvious sane solution you suggested for normal decent families, there should be some government relief program for caregivers. Think one of the articles on your site is about making caregiving a psychological disorder, and thus being able to “condemn” the caregiver with Dx that would enable her to collect Social Security disability. (My nephew gets similar, for being a pedophile sexual predator! Is there no justice in life?)
That is really reaching LOW, degrading, to simply get help for caregivers who are doing it all themselves and have sacrificed everything and beyond. Of course they’d be nutcases eventually. What kind of weird backlash situation would it be to put emotional wrecks in a caregiver position?
However instead of a direct Dx of “caregiver complex,” let these crazy caregivers apply for disability for themselves in a certain way. They are totally disabled by proximity, obligation, and rescue mode to a totally dependent frail human.
Of course we are not disabled in the every day sense, as we are totally caring for someone, often by ourselves. If a person had a 150# tremoring painful tumor on their body that took over their lives and prevented them from getting any kind of job, they’d qualify for disability. So perhaps there can be a “disabled by Proxmity” adjunct to SSI disability. It could include Medicaid healthcare, dental, monthly stipend and perhaps equal amount put away in 401K or similar. Or for every month caregiving, an additional recovery pay of a week’s worth.
I am screaming more about the situation than my own case. I had a friend who was stuck with much more advanced Alzheimer’s mother, a sundowner, and nearby deadbeat brother. He lost his job, could hardly leave the house, the IRS coming after him, car broken down. He had nowhere to turn for help. He spent one evening posting drunken suicide notes on Twitter. He too was crying, “why isn’t there anything to help ME! This is crazy!” When he couldn’t be joked out of his suicide frame of mind, I decided to intervene and called his local police who came to check on him (and called the deadbeat brother to come over to rescue the situation…great.) He hated me for it. In this sort of case, again no help for him, but the county (in looking out ONLY for the needs of the sick mother) may have decided he was no longer capable, and “kicked him out.” One of those Catch 22s we are in.
ok, better get mom up.
We (my husband & I) have had my parents living with us for 3 years now. My dad is legally blind but functional at 79, mom has mild dementia so far at 76. Neither drive and both have many Dr.’s and I am able to only work part-time in order to provide the care needed. Mom tries to help prepare food for dinner meals, but it is difficult as she does this when I am not home from work yet and she forgets the recipe, at times ruining the meal and I have to start over from scratch.
I must be the exception to the rule, 2 of my daughters who do not live in the same state that we do are invaluable in the help that we get to get a break. My oldest daughter who lives at Ft. Riley, Kansas and has 6 children ages 5 to 14 kept them for 15 months at one time when mom needed surgery to repair both of her rotator cuffs in shoulders. She just got done accompanying them on a cruise so that they could go. They require alot of help, but her and her husband wanted them to be able to go while they are still functional to a point. Her husband is the Band Commander there, so she also has many duties associated with his position, but seems to be super mom. I have no idea how she gets it all done. Oh to be young again.
My 2nd daughter is also at Ft. Riley Kansas and has 4 children from 18months to 8 also is willing to help where she can. To be the relief when my parents are visiting from time to time and the older sister has a function or needs some assistance.
My older brother and only sibling is a preacher in Illinois, and only gets his housing for pay, and also works at a Big Box Discount Store for about 30 hours per week. They can give their time occassionally if I need it, but it is difficult at best to coordinate my life around their limited ability to help. Oh, did I mention that my parents pay no compensation to us nor any money to help run the household. They just don’t have it. I feel blessed that we have the ability to cover it all. But we have no real retirement savings and are in our early 50’s I can’t help but wonder who is going to take care of us if we can’t get any money set aside before we have to retire?
What if one of us has a serious medical problem. My kids can’t just drop everything to rush in and help us as they have their own families. My one son is in Afghanistan with the Military, his wife is wonderful and has 5 kids to deal with by herself while he is gone, ages 1 to 12. The other thing that bothers me is that we could not drop everything to go and help her if something happened where she is. My Youngest daughter is also in another state and has a new baby of her own, and so her hands are also very full right now. So even though I have limited help, I go into the future wondering what it holds for us and if we actually will get to have one???????????????
We love my parents to death, but it (the caregiving) is in every action, every thought and every process we go thru just to live. We don’t have a seperate life no matter how we try. They went on the cruise for 1 week and was gone for 3, (a break you say) no way, we built a ramp for the front of the house while they were gone by hand to make it easier for both of them to get into the house. Mom can hardly get up a 7″ step anymore, and dad can’t even see the step it was necessary addition to our home. So that was our big vacation or break while they were gone.
If I gave you a day in the life you would wonder where we ever find time to sleep. Oh did I mention my husband has his own business and we run that full time also. It is a 24 hour Heating and Water Heater Company that is very busy especially in the Winter time as you can imagine. It can get pretty hairy schedule wise. I am a License Property Manager and can only work part time in my field, which is hard when you have the many responsibilities associated with my job. I would like to open my own company, but for now I work for someone else who is very open to my frequent schedule changes due to dr’s apts. Well, I won’t go on, but all of us need each other if not just a forum to get our feelings and thoughts out.
My husband was diagnoised with Alzheimers 5 years ago. We had only been married two months. We called his 2 sons and told them. That was the last time we heard from them. My husband has a cousin a few years older than him, who knows it all. She has showed up everytime someone became seriously ill in the family and got the disabled person to sign all their property and money over to her. She has several million dollars. She tried t get my husband to sign ovr his house and insurance policies to he as well. She drops in whenever she feels like to tell me what I am doing wrong. My husband was a bit on the lazy side long before he got sick and never did anything around the house to keep it maintained. I huge limb fell down and crushed my car, ripped the electrical meter off the side of the house and damaged the siding. Met Life sucks by the way. It cost $5000.00 to get the electricity back on and brought up to code. He had to get the chain saw and saw the huge limbs into small pieces that I could carry to the trash. Now, Met Life and two other home owners insurance companies have told me in order to insure the home I must have the 154 year old pine tree removed and 20 other trees cut down. I am 58 years old, have two metal plates and 4 screws in my back. My husband’s cousin sat in our living room and told me I had to better get busy. I pasted caregiver burnout a few years ago. I am not a very nice person anymore. All of our money has been spent taking care of him. He can not walk because 8 years ago when he retired, he retired. He gets up out of bed whenever, seldom gets dressed and sits in his chair while I wait on him hand and foot. Of course, he stays up to watch porn movies and wants sex. He is a large man which requires me to get on top and do all the moving while he lies there enjoying. I no longer feel like a person. Death, mine sounds more and more like the only option I have. He is not the person I fell in love with and I am blamed for everything that goes wrong. He argues and puts me down for everything. I understand Alzheimers is not his fault, but he milks his illness for everything it is worth. He craps in the bed and in the chair and that is my job too. I can not afford to hire anyone to sit with him, He refuses to spenda day at a day program or a respite center, but the director of the Alzheimers Association here tells me she feels sorry for the caregivers. I will be dead long before he is. My life ended 5 years ago. I am hontestly thinking of running away from home. I am not cruel and have sucked it up and taken care of him. I went to the grocery store and was gone 5 minutes longer than he thought I soon have been gone and he called my cell phone 42 times in 4 minutes. No one cares about me, just as long as they do not have to be bother. This is not worth it. How much can a person take. Wish someone would donate some money for me so I could put him in a home and leave. I no longer feel like a person. Who I was and how I felt has been destroyed. If this sounds selfish, I am sorry, but the a holes that have refused to help their father should be held accountable. Of course, we make too much money for any Medicaid, but I had to drop my health insurance to take care of him. If I stay, I will end up a bag lady. What is it like to feel like a person instead of a slave to a mad man.
Hi Rebecca,
First I want to say that you don’t sound selfish at all. I might have “run away” a LONG time ago. You sound very frustrated and angry and overwhelmed and you have a right to be all of those things.
I will sound like a broken record here but it’s a fact that 40% of caregivers die before the person for whom they are caring. That is especially true when it comes to caregivers of persons with Alzheimer’s disease. You must take care of yourself even if it means making some tough decisions. If you die, there’s not going to be anyone to help your husband and it sounds like you husband’s aunt may be lying around in wait for that day.
It’s difficult to determine which part of your husband’s behavior is due to the disease and which part is due to his innate personality (perhaps this is why his sons don’t come around – maybe he was never kind to them as they were growing up). Some of the things that he does sound uncharacteristic for someone who has had Alzheimer’s Disease for so long. Do you have any information as to which stage of the disease your husband is in? Has he been tested recently?
Have you spoken to your area AGency on Aging about getting some free respite care? (They have a program, although it takes awhile to get into it sometimes.)
Have you joined a support group? (I DO understand that he probably won’t accept the respite care and that he probably won’t allow you to go to the support group.) But there are ways to work around this. (See my article on Sneaky Ways to Get Respite Care Accepted).
Have you looked into the possibility that he may qualify for Medicaid and thus qualify for placement in a Memory Care Facility under the auspices of a nursing home? Medicaid is still available for those persons with a spouse who needs to remain in the home and also have a car to drive and a certain amount of monthly income – you do not have to be completely destitute. (And health insurance for yourself is an allowable expense.)
Have you looked into getting help from either a geriatric care manager or an eldercare mediator. Both of these professions have people who will arrange a family meeting and encourage the family to make a joint decision (even if it’s a decision not to be involved and give YOU the freedom to act in YOUR best interest as well as his). A geriatric care manager can also make a plan of care that can be followed – she can help with placements, legal papers, safety measures and a number of other things.
As far as his aunt goes, are there papers in place that give you power of attorney so that he does NOT sign over anything to her? If you are very concerned about this, you may want to seek guardianship.
You are right. You cannot go on like this and you need to seek as much help as you can immediately in order to get your life back. I don’t want you to be one of the statistics.
Blessings,
Shelley
Rebecca,
After reading about your dilemma, it seems obvious to me that no matter how ‘sneaky’ you are about getting him help, he will refuse it or inhibit you in some way from even asking.
I run into many bad situations running a homecare agency and these tips, although professional and sound in many cases, from my experience, do not work with someone like your husband.
I say at this point, call in Adult Protective Services (APS). Anyone can call APS, and all calls to them are anonymous if the caller wants them to be. However, as his wife, living in the home, you’ll have to tell them you do not want your husband to know you called. As far as he is concerned, all he needs to know is a concerned neighbor called.
APS is called in, in situations where there is suspected abuse. This abuse is two-fold. He is not only abusing himself by self neglect, but abusing you mentally, if not verbally and sexually… whether he knows it or not remains to be seen.
Once APS is called, APS will visit the adult’s home within 3 working days, or within 24 hours for life threatening situation. Services will be provided that reduce the risk to the adult(s) and support the adult’s ability to stay in the community for as long a possible.
Competent adults have the right to exercise free choice in deciding whether to accept services. If an adult appears to be capable of understanding the risks and chooses to stay in an abusive or neglectful situation this can be a difficult decision for others to understand or rectify in anyway. APS will offer services and try to convince the adult to accept help. If there are questions about the adult’s mental capacity, then a mental health evaluation will be pursued to determine if court-ordered interventions should be provided.
When you call APS, be prepared to follow through and cooperate with them fully, telling them everything you wrote here. He will comply with what needs to be done or they will place him in a facility. I call them for situations like this. These clients either get real and get help, or end up in a facility. I see it all the time.
Best of Luck to You Rebecca.
Robin
Robin,
Thank you so much for that suggestion. I believe that you’re right about Rebecca’s husband thwarting all efforts for respite care.
However, this is a very drastic step and one that needs considerable thought.
Thanks again,
Shelley
I am not related to the 80 year old woman I care for, I moved her in because her son lives across the street and he and his sister were gonna help with her.
I’ve been let down so many times by them and they have been talking about me behind my back saying I bug them all the time, I realize they are looking for excuses not to help and when I have talked to them it’s all about what a bad mom she was and how important there lives are because there so busy, one day I asked him to come help because his mom clogged toilet up with large bm. She kept flushing and the water and faeces was flowing into my hallway, almost 2 hours later after I got hanger to unclog and bleached and sopped all the mess up and cleaning last of it he comes in says I was on phone with insurance company, I do every thing for her and I’m 60.. I’m going to finally get help from pace program and I raised her rent from $700 which includes food , toiletries, utilities and I do all cooking ,cleaning and care for her so I told her $900 or assisted living, I just can’t do it all anymore for free, I ended up telling her son off because he was never gonna help or her daughter.. I’m in a bind now because I care about the lady and my heart breaks for her.. they had her over to dinner 4 times in 15 mos. Act like they don’t see her outside so I did tell am off cause she was crying, so know it’s my fault they don’t come around. I just need to here someone’s opinion I guess , because I feel used I knew him 14 years and know don’t respect or like him..
I am more fortunate than most caregivers. I’ve been overseeing the care of my mother now for a little more than 8 years. She has dementia and each year has less ability than the year before. I’m lucky that from the beginning I was able to put her into an assisted living facility. Still even though I’m “overseeing” her care and not doing all the work myself. I am overwhelmed with the responsibility. I work a full time job, often 45-60 hours a week. I commute 60 miles one way to work at this job and because I’m single I have all the home maintenance to do by myself. There is no husband or children to help. I have four siblings, three of which live out of state and the one that lives here drives truck over the road, not that he’d help anyway, none of them do. I hit the ground running at 5:00 am doing farm chores, getting ready for work, driving 75 minutes to work at a job I no longer enjoy, working through lunch so that I’ll have time after work to check on my mother, to drive 75 minutes home to do evening farm chores and to fall exhausted into bed at 8:00 pm. I am responsible for overseeing my mothers finances, for overseeing her care including making and taking her to medical appointments. In spite of the fact that I get vacation from work, I haven’t had a day off in more than eight years that wasn’t spent doing something for mom. I am resentful of a mother who was abusive to me growing up, towards siblings that refuse to help me care for her or to help me so that I have time and energy to care for her. I’m careful to write down everything I do for her, every penny of hers I spend as I know that when she eventually passes the siblings will be there with palms outstretched wanting an inheritance. I do not get paid to take care of my mother, she did not understand that in order for me to get paid she’d need a document for that. When I have to take her to multiple appointments in a week I do use her money to pay for the gas when my budget won’t stretch far enough to cover the extra expense. I feel dead inside. Sad to say I’ve reached the point where I pray every day that she will die.
Oh no…. I don’t see that you are more fortunate than most caregivers. All caregivers have different types of burdens to bear. I can tell that you are exhausted and about at the end of your rope. Is there any way to make some changes so that your life will be a bit easier to live? If you’d like some other caregivers to chat with, we do have a closed facebook caregiver support group of almost 4000 members. You can find it here: https://www.facebook.com/groups/CaregiversConnect/ We’d love to have you join us.
So sorry to hear this. Caregiving is never an easy job and it’s especially difficult when you are trying to care for someone whose children don’t seem to care.