How do I convince the kids it's time for a nursing home?
I have kept my mother in law at home with me and my family for 17 yrs. She is basically bed bound now and requires 24/7 assistance with all daily needs. For the last 3 yrs I have literally stayed in the house with her. I am tired, worn out, and just frustrated because no one will give me any relief. My husband works long hours and does what he can when he is home. I wouldn't have made it this long if it hadn't been for him. His sister or brother visit every few weeks for an hour and then go home to their lives. They always have excuses as to why they can't come or stay longer. My mother in laws health is quickly declining. I feel its time to put her in a nursing home where she can get the best medical care for her situation. I'm not physically or mentally able anymore. Since her children have always told her they would never put her in a home, I am faced with them fighting me on this discision. How do I help them understand its for her well being as well as mine? How do I approach my mom in law and help her not feel like I am trying to throw her out to die? I'm at the end of the rope, hanging afraid there will be nothing to catch me when I fall. I'm in desperate need of professional advise and don't know where else to turn.
Thank you for writing to ask this very important question. How can you find relief for yourself, proper care for your mother-in law, and not end up fighting with the family?
First, I want to share with you what a very elderly woman taught me many years ago. "Pride goeth before a fall." I am afraid that all of your kindness and good intentions have, with the passage of time, turned into a form of pride. It is too heroic to think that you can give 24 hour care to a woman who is mostly bedridden.
You must find a way to convince yourself that you won't be throwing your dear husband's mother out to die. You need to get a respite caregiver in each afternoon. You need to spend part of the time seaching for a proper nursing home. You also need to spend the respite time caring for yourself in a way that works for you. Can you go to the gym, go for a walk, get a massage? Can you spend time in contemplation, yoga, meditation or prayer? Perhaps a support group or counsellor could help. It is going to take time to unwind after what you have been through for the past three years.
As soon as you find the nursing home that suits you, talk with your husband. Then both of you should talk with his mother. Explain that you are tired and need help nursing her. Assure her that you won't just be leaving her there, but will still be with her as much as possible. Ask the nursing home administrator to help you explain to your family what their mother needs. You might also hire a geriatric care manager or social worker to help with the communication with the whole family.
Be patient. You have been carrying a burden for so long, that the family dynamic is out of balance. They may feel threatened at the idea of change.
Show them the nursing home. Show your mother-in-law. Get her in a wheel chair, if you can, and take her around.
Good nursing homes bring relief to the patient who needs bedside care. A good nursing home may even be able to get a patient out of bed and walkiing. The nursing home staff can become extra eyes and arms and legs for the rest of the family. Also, sometimes people who go to nursing home heal and come back home for awhile. Or sometimes the elder's time on earth slips away.
Communicate to your family as clearly and genuinely as you have reached out to ask for help. Don't hold back out of false pride. After a time you will have helped your whole family work together instead of fight.
Also, I would like to invite others in the caring.com community to share their experiences to help you walk this difficult and delicate path of communication!
So many times one person in the family takes over the major portion (or all) of the care for a sick family member. This is my situation as well. Just as often it is the non-caregiving family members who have strong opinions of how this care should be carried out. It is obvious that you care for your mother-in-law or you wouldn't have had her in your home this long or be going through the emotional turmoil concerning her possible placement. I would suggest that you visit nursing facilities taking special notice of urine smells, how long it takes for nurses/CNA's to answer patient pages, and whether patients who need help eating are getting this help. If you are satisfied with these things, you have probably found a good facility. Also, check on www.medicare.gov to compare nursing homes. Another possibility may be to hire a nursing agency to come into the home for some of the bathing and toileting care. I have had an aide come in for 2 hours a day since January and it is such a relief. Maybe the other family members could take on the financial responsibility for this, since you are taking on the physical responsibility. Good luck. I know how dificult these decisions are.
In home care is an excellent way to get you a break. I agree talk with mom in law to get her input, if she's able. use the time the care aid is there to researh facilities in the area.As a former home health aide I advised families to visit places both announced and un announced. take one good whif of the air as you walk thru the door.Any smell of urine or feces, don't waste your time or theres simply leave. unannounced visits are a good way to get a candid view.also look carefully at her assets as she will likely be expected to apply for medicaid.Apply for nothing until you see an attorney skilled with medicaid. ther is another section on this sight about financial issues. checkthat out as well.
You can find a national database of geriatric care managers, searchable by zip code, right here on Caring.com. I wish you all the very best!
I work with many familes in your situation which is very difficult. My job is to save you time and help them to find the right care, either in-home or care community (full skilled nursing or assisted living). My service is free and I can provide you with a path to help narrow the choices in your area.
Dear Lady ~ It sounds to me like you are way past getting in-home help. There comes a time when our elder loved ones absolutely must have 24 hour skilled care and anyone, regardless of financial circumstances, can obtain that care. You cannot do it alone and you won't be of any use if you drive yourself into physical and emotional collapse. Even if you were a registered nurse or MD, no one can provide 24 hour care - it requires a team of people. Ultimately, what may be more difficult is dealing with the guilt associated with turning that huge responsibility over. If I may be so bold; don't beat yourself up and do NOT let anyone else batter you emotionally for proposing and implementing that decision. My father's four sisters disapproved to our "turning dad out" but only one of them had stepped up to helping. One of them who had taken care of Grandma in her home, said, "I promised Mom I would never send her to a nursing home!" Yes, but, Grandma only weighed 80 lbs, was in control of her bodily functions, could sit up and walk around and didn't have dangerous dementia and frequent seizures either. What was worse was that although Dad didn't always know what was going on or who he was with, he was cognizant enough at times to be mad at me for "putting him in there". I had to remind myself that not only was he receiving quality nursing care in his inevitable decline but he had frequent companionship with other seniors and family members who couldn't bring themselves to visit him in the home setting.
You have to be convinced this is the right thing in order to marshall support from your husband, to stand firm against the inevitable guilt trips and to lovingly share your decision with Mom. What helped me was that after his last fall - he was trying to get himself out of bed - the doctors said he must have 24 hour care and what I emphasized with Dad and everyone else was that for medical reasons he needed SKILLED nursing care. I think what may have helped ease the transition was that after numerous hospital stays, this place was just one more medical facility. May the Good Lord bless you in this difficult time! Sue
Dear Pamalakay: It's sad to hear about your struggle, though your problem is not uncommon. I just wanted to give you some other ideas to consider when trying to choose a nursing home. First, you can let go of the guilt. It is appropriate to move your mother in law to a nursing home when the burden of caring for her is too much. The siblings who don't help aren't going to change. Those who aren't doing it don't understand how much work is involved and how hard it is, so they can stand there from afar and be critical. Don't let that stop you. You have the right to make this decision with your husband and your mother in law.
Next, if you need to pick a nursing home, be very careful in your choice. I've worked in them both as an aide and as a nurse, and I've sued them as a lawyer. Don't rely entirely on medicare.gov's website. It has numerous defects. Use several websites to narrow your choice. Visit. Follow the good suggestions given by others about dropping in unannounced. Do the best you can in finding one that is close, so you can visit often. You'll need to for your mother in law's safety. No nursing homes are perfect, but some do a much better job than others. I've written up how to evaluate nursing homes from a lawyer's point of view in my mini-book, How to Choose a Nursing Home, which you can download in minutes from AgingParents.com. I wish you courage and the best in your caring for your mother in law. Carolyn L. Rosenblatt, R.N., B.S.N., Attorney, AgingParents.com
I know ALL about this...
Just like you, I had once dug myself into a VERY deep hole. Once the hole was dug I realized I was at the very bottom of it, and I asked myself "How am I supposed to get out?"
I will tell you the answer...
FIRST: The CHILDREN-in-law WILL NOT HELP in any way. You know that.
SECOND: What you do NOT know is that YOUR HUSBAND WILL NOT HELP either. Not that he doesn't care - just that he cannot COPE. I know you feel grateful to him for what he does when he can do it, but have you ever asked yourself WHY HE WORKS SUCH LONG HOURS? (Now, be honest with yourself, and NO, it has nothing to do with YOU!)
THIRD: The last thing (which you probably already know) is that YOU (you, especially) CANNOT HELP! Pamala, YOU ARE THE PERSON WHO IS MOST IN NEED OF THE HELP...
RESPITE CARE will not get you out of the hole. A HOME AIDE will not get you out of the hole.
All the advice that has been given is good advice, but none of it should be directed at YOU! The last thing you need is "one more thing to do."
YOU are EXHAUSTED. SEVENTEEN YEARS! If you have not already taken action with respect to placing your mother-in-law in a care facility I am going to give you the BEST ADVICE you will receive from anyone.
RIGHT NOW CALL 911.
Tell the 911 Operator that two adult women are in immediate need of medical assistance.
Tell the 911 Operator that one of them is elderly and bed-ridden.
Tell the 911 Operator that the other is the elderly woman's caregiver, and that the caregiver is suffering from nervous exhaustion.
Answer any questions the 911 Operator asks, then sit down and wait. Don't bother calling anyone - they are all too busy.
When the EMT's arrive they will understand immediately. When they ask who is responsible for the elderly woman, tell them she is YOUR HUSBAND'S MOTHER.
Give them HIS office and cell phone numbers.
While they prepare your mother-in-law for transport to the hospital they will check your vitals and ask you if you feel you require hospitalization. Of course, you do not. TELL THEM YOU ARE JUST EXHAUSTED. (All you need is bed and sleep for a month.)
When they drive away, DO NOT GO WITH THE AMBULANCE TO THE HOSPITAL...
FIRST: TAKE THE PHONE OFF THE HOOK.
SECOND: Pack a small bag of your mother-in-law's things for your husband to take to his mother at the hospital.
THIRD: Take a hot bath or shower, THEN GO TO SLEEP.
The hospital will call YOUR HUSBAND. HE, in turn, will call HIS SIBLINGS.
At the end of her stay, HER CHILDREN will be responsible for researching and visiting care facilities, meeting with facility directors, touring, and then fighting about all of it. A hospital Social Worker will assist them with the process. They can even fight about how to pay for it.
And you, Pamala, YOU will sit back and WATCH...
9 1 1.
BECAUSE YOU NEED HELP - IMMEDIATELY.
All my love and care to YOU.
Hi, I would like to say that I am a cna and an hha for the past 15 years and have worked in ltc facilities/nursing homes and in home health agencies, and will be an lvn soon. It would be wise for anyone who is considering placing their loved one is a ltc facility to go in unannounced to visit your loved one, and if any problems do arise to ask to speak to the social worker there on staff, as they can get things done for you asap. My personal opinion after working in ltc facilities for many years, this system needs an overhaul, because alot of neglect and abuse happens in these places and at least in the state of California, the state inspectors only come in once a year, and all the staff are on alert/their best behavior, because they know when they're coming in to inspect the ltc facility, my opinion is California ltc state inspectors could be doing alot more and a much better job at securing the safety of this fragile population. Home health care is the way to go, clients/patients are so much happier and feel more secure in their own or familiar enviroment. I love working with the elderly and will continue to, its magical and very gratifying work.god bless.
Thanks so much for all the good information... and thanks for being one of the GOOD GUYS who really care about the elderly and infirm population you serve. Your vigilance and high standards are EXACTLY what is needed by more of those who work in your profession.
Meanwhile, however, we home caregivers MUST HAVE ALTERNATIVE OPTIONS, (or we too will soon be under your care...) Please DO NOT TELL US THERE ARE NO OPTIONS - ESPECIALLY WHEN WE ARE DROWNING!
Pamalakay has cared for her mother-in-law IN HER HOME for OVER SEVENTEEN YEARS. When she cries out for "HELP" in true desperation, this is neither the time nor place to tell her that there are NO VIABLE OPTIONS
This is a CAREGIVER SUPPORT site/forum, and most of us have BEEN DOING the home care routine you so strongly espouse, (and doing it for much longer than we ourselves can believe would ever have been possible.) Our health suffers, our children suffer, and our marriages are at risk. Many of us ruin our lives and are run into the ground financially - caring for our parents.
We CANNOT be expected to trade ALL of what remains of our own still-vital lives, (and the lives of all in our households,) to provide for our frail elderly. Somehow, someway, the system will have to change... but MEANWHILE, to paraphrase what SueD so eloquently states in her post, not all nursing homes are bad places... (Thanks, Sue!)
I know you mean well, (and knowledge IS power,) however, your posting would be more appropriately contributed via a different thread. In fact, I would encourage you to browse this site to locate MULTIPLE other threads where you could REPOST what you have said and the warning would be useful.
There is an audience hungry for what you can offer, an audience better able to use the knowledge and experience you've acquired, but that audience is NOT a caregiver crying out in desperation...
Check it out...
One would think that a health care worker would have the inside track on skilled nursing facilities but we must remember; not all facilities are bad places!!
Yes, it is wise to visit unannounced and use your nose to reveal cleanliness but don't condemn all nursing homes as dangerous places for loved ones.
I have met and come to know many compassionate, hard-working caregivers, nurses, aides, social workers and even housekeeping people in numerous facilities in my dad's decline and another family member's final time with Multiple Sclerosis.
YOU can help with their care and attention by being a frequent and irregular visitor (if they don't know WHEN you are coming, they won't know to make sure mom or dad is up, dressed, clean, etc. - they will stay on alert) Also, human nature being what it is, I have found that friendliness and attention to the staff naturally causes them to be more attentive to your loved ones.
Please don't condemn yourself and your loved one to home care if it is not possible or advisable based on the fear of less than desirable care elsewhere.
Pamelakay, I am going to go out on a limb a bit and suggest a possible different direction. You say your MIL is basically bedbound. Have you considered the fact that she may now meet the criteria for hospice care? You did not give enough medical information for me to know her status, but patients with debility (those who are not able to perform their own activities of daily living, losing weight, muscle wasting, frequent infections, etc.) may qualify for hospice even without a specific terminal diagnosis, such as cancer, heart disease, lung disease, etc. This means she would have a RN Case Manager who would visit at least 1x/wk, Hospice aide services for personal care a few times a week, a social worker for you and her and the entire family, and volunteers who can come in and provide respite so you can get out. Also, hospices have to provide respite stays out of the home for up to 5 days at a time to give caregivers a break. This respite stay may be in a nursing home, a hospital or a hospice residence depending on the hospice. I know this may be an even bigger hurdle to tackle, talking about this with your husband's family, but it may be another option to consider. Good luck! Sandy
As much as it pains me, I deal with exactly what Pamlowa describes everyday. Caregivers who have had all they can take and call 911. Actually...calling 911 is all they have left. One of the biggest problems with caring for a home bound person is the overwhelming and complete isolation that is forced on the caregiver. It is real believe me. Since you are forced to be one place 24/7, you are not likely to come looking for those who have promised help. When they do show up, you ask, they leave with a mouth full of promises, and the cycle repeats. For the first few days you actually expect it to happen. By day three you are again bitter and gearing for the next visit. But , so are they. As a professional caregiver with 30 years of experience, I can give you some advise that worked for several people I know. One very recent and very sucessful. The caregiver made a list of three close facilities. She handed the list to her husband and his siblings (mentally challanged sister age 66 with CHF whom she had cared for for 11 years). She instructed them to go visit and chose one. They had one week. She also wrote the numbers of the transportation companies available who could transport the sister to her new home. She said THIS made them take notice. Since none were willing to help or take the sister into their home (4 of them plus the husband/brother), she had to force the issue. They berated her and tried the guilt factor and she was ready with "wear my shoes" responses. There was nothing they could fight about. The turns of caring they promised, and continued to promise, were kind of sad after 11 years. The siblings ended up chosing a facility and even took charge of the arrangements. One sibling, who was so outraged over the chain of events and felt "forced" to take responsibility, found just how hard the job was after refusing to LEAVE her amoung strangers for the first 3 days.On the 3rd day she was so happy to go home and shower, watch TV with no interuptions, and smell clean air!The relationships are strained, but the caregiver can now actually attend school activities and has met a teacher for the first time in 3 years. While sometimes just speaking up is not enough, taking all the guesswork out of the options can make a big difference. Good luck and all the best. On a side note..not everyone will be happy, but they didn't consider you either!
Go back and read Galawa. I was my husbands daily caregiver for 8 years. One night after a fall, I had to wrap a leather belt around his chest to try and get him up. An hour later another fall. I realized it had been 2940 days of unremmitting care I had given him. I dialed 911--took 3 more falls that day while the paramedics threatened him with involving the police before he agreed to go to hospital. I followed much later after I had some sleep. I went to the hospital (because I have no nearby family support) and said I was done-giving up-finished.We worked through the system and he was placed in a very good facility where he is safe but not happy. Do I feel guilty, H--- yes, do I regret it--not one bit. I am technically in the last 20 percent of my life expectancy--If I had kept on I think I'd be looking at the flowers from the root side. JUST DO IT!
Having run nursing homes for almost 30 years it's time to ignor the old stigma and make life easier for everyone, including the patient/parent. Having told children that Mom would never go to a nursing home is like telling them that there was a Santa.....A time and Place for eveything. Do your homework and find a place that works for you..convenient, good reputation. etc.
Mark Rosenberg www.westernmediationservices.com
I'm sorry, this is not your responsibility to talk to your inlaws about their mother. Even though you have been the main caregiver, it's now up to your husband to support you and talk to his siblings and tell them that as much as it pains the both of you, mom's needs are more than you are able to handle and it's affecting your physical and emotional health as well.
I would ask the kids who is going to take care of their mom when you can't. After they give their various excuses let them draw the conclusion that it is time for the nursing home.
Theanswer that "it isn't her right to speak to the family is wrong. this woman has earned her right. Also, where is her husband, certainly he should get involved. If he can't she needs to have a very serios conversation with the inlaws, not even a question.
Mark R., it was never my intention to say it wasn't her "right" to speak to the family. My thought was she has done SO much already, to add the burden of convincing her in-laws shouldn't be put upon her shoulders as well...her husband, who seems to be avoiding the whole issue albeit unknowingly, should step up now and help his wife and speak to his siblings and give his wife the much needed support and rest she so deserves. She certainly has "the right"...the right to expect her husband take over with his family and spare her the extra stress it would cause.
I think the call to 911 is the best idea to bring the situation to a head. If you 'wait' to get the family together so you can talk; your wasting ur time. It has been quite easy for them to sit back and let you take on all the responsiblity; just so they can have a warm fuzzy feeling that their mother is 'at home' while your suffering goes totally unrecognized. And then they do their best to make sure you feel quilty for wanting help!! It has been quite easy for them to manipulate you into caring for her for 17yrs, so they are going to continue this route. It has worked for them 17 yrs so do you really think they will change unless forced? Really?
I would def have a hard talk w/the husb, who left you to take care of HIS mother ALL ALONE. Going to work that many hrs is a nice excuse so as to not have do deal w/his mother's aging at all. He has also abandoned you. Manipulation has worked quite nicely for him as well as his siblings. So he is just as bad. Do you really think they want anything to change. Dont delude yourself! If you demand that they do something, they can get in their cars and drive home. Guess what, the MIL is still AT UR HOUSE!!! Problem solved for them.
You need a rest, and RIGHTLY SO! Call 911, its the only way to get the family to step up and take care of THEIR responsibility NOW not in several more years. Why should you waste your time making mult appts/drive all around town for weeks finding just the right nursing homes. Then you go and present the results to them and say pick. Do you really think they are going to agree w/you? HELL NO!, they are going to say we didnt see the nursing home, we dont know about them, we weren't there etc. They will NOT pick one. They are just going to get mad at YOU! You need to give them a wake up call and NOW. Save yourself for once. You need to save what little sanity you have left b4 you end up in a psychiatric ward.
I am totally on board with the 911 call Scenario - my 78 year old . Mom is a over-involved caregiver for my 99 year old grandmother (end-stage Alzheimers) and my 70 year Aunt is minimally involved. My husband and I have taken a step back from the scenario and are now just waiting for a call from the home health aide informing us that a negative event has overtaken my Mom. As I have repeatedly told my Aunt should something happen to Mom, she will be responsible for my Grandmother, since my Aunt is the closest relative. My Mom has refused to place my grandmother into a 24 hour care facility and has not thought about any "back-up" plans. So, I sit and wait for the other shoe to fall.
A month ago I had to admit a close friend who is only 54 into a nursing home. It was hard, but he had no one to care for him as his family bailed after ripping off his funds and I live out of state. The home is fantastic in their care. He would be dead if not for my choice. You may be dead if you don't seek relief for yourself. 17 years of loving care for a healthy person is difficult, for an ill person it quadruples. Remember, your kindness was your choice. But the responsibility for her care ultimately falls on the shoulder of HER children. Tell them you will support them in their decisions, but you are not part of the equation any longer. You will continue to love, visit her and provide relief in any way possible. But your primary care giving days are over. You deserve a life too. A friend of mine said the happiest years of her mother's life were in the nursing home.
I am having a similar problem, but not to that great of an extent (17 years is worthy of the Official Saint award!) and not me personally. My mother is providing 24/7 4-5 days per week care to my grandmother who is totally bedridden. she does this so my physically disabled uncle can continue to get my grandmother's rental assistance, as living in the part of the country they are at is too much for him to afford on his SSDI. he is incapable of giving this care, and was turning into a nightmare of verbal/psychological abuse and physical intimidation daily on my Gran. I had my mother step in basically to save Gran from him, but all the family refuses to place her in a home and she does not want to go into one.
now, my mother is at her own end with it--emotionally and physically exhausted, and needs to leave to obtain outside employment to pay her own household's bills. Social Services say gran can't get any help from them because she makes too much money on her pension, and she's still capable of running her own affairs (I would debate this, but I'm no cognitive psychologist nor geriatrician).
the family grudgingly gives my mother 'gas money' when the issue comes to a head (she travels 40 miles to get there every week), but otherwise resents the suggestion that my mother 'needs to be paid' for her work. the Social Services officer informs me that workers in the industry are paid $12-$15 at a minimum to do what my mother is doing every hour of every weekday.
my mother knows that if she left, my uncle would try to cope on without really being able or willing to (he was unwillingly and resentfully doing it before she started helping) simply because he is not willing to take steps to ensure that his own affairs are handled (refuses to sign up on section 8, or get foodstamps, or do anything that will change his living situation, really). I informed him that he would have to make these same arrangements if my grandmother died tomorrow, but he obviously isn't ready to hear that either.
my grandmother had to be in a facility for 2 weeks after she broke her hip last year, which started her on the decline she is in. she detested it, and claimed that they gave her food poisoning. she would refuse any attempt to put her into one of 'those places'. the rest of the family is just thanking their stars that they only have to provide transport and occasionally drop off supplies.
it's an ugly situation, and until someone decides that they've had enough, I just don't know how it will end. poorly for everyone, is what I'm guessing.
I want to be presumptuous and say this: everyone needs to have a written set of instructions as to what they want done in ANY eventuality. and they really need to think beyond the fact that 'I don't want to go to one of those places'. sitting at home with diaper sores and bedrash while avoiding telling your adult son that you need your diapers changed due to embarrassment to both him and you is no picnic. being yelled at by resentful, overstressed family members is no picnic. dying slowly and piecemeal is no picnic wherever you are. tearing the family apart as you do so (no one will even speak to me now, simply because I am able to contemplate and advocate for the unspeakable) is especially unpretty.
consider all that may befall you, and take steps NOW. not when you fall down and crack your hip, after you'd been getting around 'just fine' on your own. not before you can't get down one flight of stairs to go to the hospital by your own power, or even to the toilet for that matter. work it out BEFORE it is necessary!
Our family had an opposite problem. I never promised Mom that I would never put her into a home but I did promise the best care I could give. After Dad died we learned of her cancer. I am the only one of several who lived nearby. I couldn't afford to do this but I did it anyway, often putting in 50 or more hours a week. The rest were disgusted, I learned, that I didn't get on board with putting her in nursing care. She was actually quite capable of most of her own care so that didn't occur to me. I have helped a few persons make their exit from this life and knew Mom was only a few weeks away from death when I promised she could die at home. I figured that seven able bodied persons should be able to do this. Mom passed peacefully and without pain in her own home. I felt victorious. They are still mad a year later. When will people start respecting rights of others.... mom's right to die where she chose and my right to voice an opinion.
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