Many families rally together after a diagnosis or an accident, but a few weeks later they’re nowhere to be found. Caregivers can face months or years of little to no family support, only to have those same absentee family members reappear when the end is near. Suddenly, everyone has their opinion on the medical decisions you’re making, the care you’re providing, and want to be there every moment. The caregiving routine and rapport you’ve established goes out the window. How can you manage the situation without a battle?
Deborah C. H. W. captured how a lot of caregivers feel:
I too have been the sole caregiver for my husband. [His family] didn’t come and help for the last seven years, so they are not there for him and you, they are there for themselves. They are taking up your space and time with him. If they really loved him and cared about him, where have they been for the past seven years?
Is your home being invaded by controlling relatives? Here’s how other caregivers have coped with the situation and regained control of their lives:
Figure out what you want
Don’t allow their guilt to become your problem. – Gilda S.
You are under stress and need peace around you…If you want their help take it, if not, tell them kindly. This stressful time in your life and especially your partner’s is not about them and they should respect that. I’m sure they are hurting as well but they need to support your decisions. – Cheryl M.J.
Know your rights
[If you’re not legally married] make sure you get something in writing from him and a witness that gives you some right! – Clara D.R.
If your partner agrees, get power of attorney asap. You are the one that should be able to make decisions; you’ve been doing it all along while being his caregiver. – Carolyn Z.M.
Check the laws in your state for significant other. Unfortunately, you may be in for a fight with his family if they have the power to move in on you. Hopefully, you have your names on items you shared as a couple. – Christine D.R.
Do you have yourself covered legally? Durable POA.? Is the house in his name or yours? You should talk to your attorney and make sure your bases are covered so you don’t find yourself suddenly with nothing. Put away your valuables where they cannot be stolen. – Toni E.I.
Figure out what your patient wants
Ask your partner what HE wants, discuss your fears with him and Hospice, then ask Hospice to support whatever decision is best. – Linney E.
You may have to remind them, or have someone else do it, that this isn’t about them. It’s about your partner and making his life comfortable…If they kick up a stink gently remind them that tensions are not going to do your partner any good. – Madonna N.
Figure out what the family wants
Everyone just wants to spend time with their loved one and the OP needs to either set the boundaries clearly or have someone set them on their behalf. This is a tough time for everyone. – Rashida H.
They need to grieve and say goodbye too even if they missed out on time they could have had for whatever reasons. Set your boundaries but remember that many need to say good bye & it might not be in ways that you like or tolerate. People take illness the way they take life and sometimes it’s too little too late and only to make themselves feel better and sometimes it “mends fences” that give a person peace to let go and pass in peace. – Minne B.R.
I suggest you make one person the liaison person so as things develop you tell that one person who then can keep others informed. This takes the stress away from you at repeating yourself over and over again. – Lucy Rea
Have empathy for them, too
Very often family members, when they are not involved with the day to day don’t realize the toll it takes on the primary caregiver and sometimes how downright unreasonable their demands or requests are. – Betty M.
I think your in-laws are just trying to help, they also want to be near their child. You need to try to open your heart to them, see their suffering and their need to help you at this time…Be tactful; no one gets hurt and everyone wins. – Missy B. K.
Since he is private maybe he did not want anyone to know; I can say I know someone like that. It might not be that they did not care, just situations kept them from being there. There is so many scenarios but I feel everyone should think about the situation and respect each other. Everyone loves and shows how they care differently. – CherylAnn N.
Try to embrace this time and accept the help (I have just been there so I know what you feel), try to remember that before there was you, there were his parents, he is their baby, no matter what age and this will be their last months with him also and so they need to have memories and feel the comfort of knowing they shared in his last months here…look at this as a time to let you get some much needed respite and rest and time for yourself to a certain extent….love wins out, love them, embrace them, it will make all the difference. – Dianne B.
Find a compromise
There is most likely some guilt and resentment going on. They feel guilty that they haven’t been there and resentment that you have been (he chose you not them). That being said, maybe you can work it out to benefit all. Talk about caregiver burnout and a way to give him the best possible care is to take care of yourselves too. Work in shifts, so everyone gets equal time and rest/self care. For his sake, smiling faces are best and less stressful for him. 12 on 12 off or 8 hour rotating shifts or 4 on 4 off. – Tonia M. J.
Set boundaries
Thank everyone for the thoughts and concerns, but politely inform them that you husband needs the peace to remain stress free and you or someone else will inform them of any changes. – Jennifer L.S-M.
You don’t have to tolerate this behavior and you have a right to keep your home serene. – Denise A. T.
Post the visiting hours outside the front door and say it’s overwhelming to both of you to have your lives disrupted. – Cheryl W.
Give them time but do set boundaries. – Minnie B.R.
Get support
I am a hospice nurse and it is our job to advocate for the family…I have no problem standing up for my patients, especially in delicate situations. – Chelsea M-M.
I would recommend social worker and pastoral services to help navigate this difficult situations. They can advocate for you both in a non threatening way what is best for your partner. – Kimberly E.
Absolutely talk to social worker or case manager. Have a close friend to be your main point to communicate with outsiders this is what many hospice volunteers do. The families appreciated this as they have a difficult time to say NO. What we want people to understand that close loved ones need their quality time with their loved ones. – Anita B.
My mom went through this with the passing of her boyfriend in her home. HIs family had nothing to do with her before this time. It was hard but at the same time, that was his family. You have to do right by allowing them their time but they need to also respect YOUR time and his. Hospice really helped her…they stepped in without her having to stress and when it was all said and done and his family left…..they stayed to help her out. HER. Not them. I really recommend them. – Leslie A.
Express what you need
They should also be prepared to help physically with things like cooking and cleaning. – Patricia D.M.
Put it in perspective
It can be very hurtful, but keep reminding yourself not to take any of it personally – its not really about you, its other people’s fears that are causing their behaviors. – Linney E.
It’s the most testing time and a very easy way to assess just how a family functions. It’s rare that there is no disharmony or disagreements. The greed guilt and opening of old wounds tends to be the norm
Kristen Khonsary you sure do not have to worry about this
Lol, yes I do….in a way.
My self-important brother did this to my mother and me. Screw these people, may they rot, and may they be treated the same way when they are infirm and need care.
Hire an Attorney
No way….. too many years of adjusting my life.
or they come to the doctors appointment with the relative they are suddenly so concerned about and expect everyone to suddenly change everything just so they feel no guilt
Yes Fiona Henneuse-Blunt. We’ve been in those situations. They think of they bluster and bully then they can prove to themselves and to those around them that they are “in charge ” and therefore absolved of any guilt.
Exactly what is happening to me …God will deal with them.
Don’t let evil people get a power of attorney. There is nothing worse than a sociopath on a power trip.
I hear ya!. My name
Was removed from thingd & the trouble maker (of which, neither of my parents liked. They tollerated her) got involved.
My mother in law tried to swoop in by attempting to change my husband’s power of attorney from me to her!!!! Had to put my foot down. Then came to our house while he was on hospice, created a scene but an angel of a friend took charge of the whole situation. #motherinlawfromhell!!!!! She said I must have given her son cancer!!! Sick, sick woman.
So sorry that happened to you.
You should not have had to deal with that. I’m glad your friend stepped in for you!
Yep
Frances Ryan, I have seen this happen.
It’s a fairly common occurrence Paula. I’ve experienced it before, and am just waiting to experience it again. But this time I’m older and wiser and stronger
Two words: Let them.
Yep I have that problem now!
It happens. All the time
This happened when my great grandmother had to move in with my grandma. She ended up bedridden towards the end and I gave up everything to help her. Mind you I was only 15. We were the only two to take care of her. When the time came of her passing, here came both of her siblings acting like they did everything and my aunt (my grandmas daughter) who did the same thing. I was 15 years old and the main person willing to help my grandma (obviously besides my grandpa).
Not gonna happen here. And that’s all I have to say about that….
I’ve watch this play out for decades with my various jobs.
Isn’t it about the person dying? I get the anger and frustration as a caregiver but focus should be on the patient. What do they want?
Like I said before, if they come to the house and you don’t want them there tell them to leave. If they don’t leave or they barge there way in the house they are trespassing and you call the authorities.
Been there did that
I will be interested to see if this holds true for a friend of mine, whose mother is 92. Has been taking care of her mother for years. There are several other siblings, none of whom has had anything to do with their mother for ages. (being that the old lady is in an AL and there isn’t even enough money for her funeral, I doubt it!)
Please tell your friend to make sure his mother’s affairs are in order !!! If not it will be years of heartache !!!!
She has nothing, really. No house, car, or money. She’s not even on Medicaid, is paying out of pocket month by month.. I don’t know if the siblings are aware of any of this, but if they come snooping, all they will get are some old clothes and a few bits of furniture out of her shared assisted-living room.
Three words: Power of Attorney!!
Bingo! Do it now!
They can change it somehow. They did it to me. They took everything including a large some of money that my father had made.
Sheila, I think you need an attorney!
I was so thank that after ten years of caring for me caring for our mother at the end they did take over. It was good for everyone.
COUSINS DID IT TO MY MOM AND DAD WHEN SHE WAS DYING OF CANCER, COCKROACHES COME OUT OF THE DARK IN TIMES OF OTHERS DISTRESS, SAD.
You should have called the cops.
Too much going on, I have since moved my ad here years after this happened because of continued theft but I just wanted it done. God will deal with them.
show em the door.
Call the cops if they don’t leave.
so true!!
My old boss called them pigeons-said they flew in at the end and crapped all over everything
😀 that’s a good one
Great line!
THAT’S EXACTLY WHAT MY SISTERS ARE DOING TO ME !!!!!!!
My brother to me. Hang tough!
I’m so sorry! HUGS
Call the cops
Just show up looking for any money they can get from the estate. 🙁
Interesting how these patterns are so shared.
Well then!
Been there they didn’t last a day , they freaked out me just sitting back watching then was my hardest lesson.in the end it was move out of my way stepping up and taking over again
At this point, I would let them take over.
That’s EXACTLY where I’m at now !!!!!!
I have seen it many times looked after people till the end and that is when the family appears plus when the person who you are looking after needed anything is was so not spend my inheritance you should see them come out of the wood work so sad Xxx
My dad was sick for 5 years no one wanted to help the 6 months of his life he was in a nursing home they showed up then only because they wanted to make sure they were in the will in mean when he was home meals doctors haircuts all daily things shower shaving all mine it’s sad
YOU ALL ARE MY PEOPLE!!!!!! Each and everyone of you, I swear! I’m an only child and have been caring for my Mom with Alzheimer’s for the last 9 years by myself. I have learned over the years that as caregivers, we definitely have to guard our hearts and our space. Family can have a whole lot of nerve. I’ll just leave it like that so as to not be TOO disrespectful on this public platform. Blessings to each and every one of you on this thread.
My mother dying right now..I have her at home with me..it was just her and I…now my house is over taken buy my family…iam going nuts..
What I did was I basically said goodbye to my mom while she was still alive, when my brother suddenly appeared wanting to live with my mom (so he could then keep the house). I said goodbye to her and stepped out of the picture (and yes, he did get the house after decades of my taking care of my mom and decades of my mom saying I needed to get the house (and having a will saying so). I just let it all go. I have to live with myself and he/they have to live/die with themselves.
How could that happen if she had a will stating it goes to you? I’m only asking because I’m pretty sure this is going to happen to me.
Sonya Jones Oh, I’m sorry to hear this. The person near the dying person has them sign a different will when they’re under pressure, alone, who knows the psychological state….
Often times in seems more important that ppl want to be “right and in control” more over than caring and supportive!
Rima Goncalves. Interesting read!
Oh…what can I say!!
Interesting topic…and so sad and common
All caregivers need an escape or a hobby. I know a guy in his early 89s who does amateur stand up comedy at open mic nights. If you are able, I recommend yoga or tai chi or some form of dance. It can be anything though. Bingo, cards, whatever suits you. We all need balance especially when dealing with this sort of thing.
I looked after my Mom to help her after my Dad passed in 1995. I then became her caregiver after she developed Alzheimers until she passed in 2008. Long story short, my brother wasn’t there after Dad died unless it was a major holiday. Everything else was left to me: insurance, taxes, house cleaning and repairs, yard work, doctor’s appointments, prescription refills… you name it. My brother, her favorite son until I was there for her full time, had Mom change her will, and when she wanted to change it back, he had her declared mentally incompetent. I lost most of my inheritance, but at least I was able to uphold her stated desire to stay at home and not go to a nursing home, which my brother ridiculed.
For children: Make sure you know what the will says. Make sure that you are compensated accordingly and with signed notarized documentation. I had POA and MPOA, but that wasn’t enough. I am now an in debt social worker having received my degree at the age of 57. I try to pass on information needed for related caregivers. Most important piece of advice: Look after your mental health. This type of caregiving can be a killer.
Caregivers, keep your guard up: If a family member is not there in time of need, and has a lack of caring, their the ones that come running back just before the death. They really aren’t interested in the sick person, their after what they can get from the estate, house or whatever. I had an estate sale business with my wife Annie for 20 years. We saw it all the time. I’ve had to call the police on family members that threatened me because I wouldn’t give them what they wanted out of the home. I asked one man who was sitting in the middle of the living room floor crying, because grandmother left the contents of her home and her retirement savings to a Humane society. By law, he got nothing. I asked him where he lived. He said, about two block down the road. I then asked him when he last saw his grandmother. Oh, a couple of years ago, I think. I made him leave the house. It’s really is, common place. And if they can come like a thief in the night, they will. Their entitlement mentality is: You know, she was my grandmother, so I get her stuff. Sad, but so true.
Interesting subject
Omg. Brings back awful memoirs!
This was refreshing to read Im currently caring for a relative and the rest of the family is in complete denial therefore are terrible with helping. They do little things but talk very rudely to me no matter how nice I’ve been to them and they have done things I prefer not to remember let alone mention so sometimes you gotta just tell them that your the caregiver and when u need their help u’ll ask. You gotta take care of you too cuz well your taking care of u and them. Its a terribly hard time but believe me having the honor and that “special something” to care for a sick relative is worth it in the end.
Don’t let them in the house. If they try to barge in they are trespassing because they don’t live there.
Tell them to piss off.
Very sad when this happens.
wow
my brother ignored my father,s dementia needs i have been looking after him for 6 years now…..he has to go in to a home because i have been seriously ill….he said to me what are you up to..putting dad away…..he has not lifted a finger
Sadly, I have lived through this aggravation with my mom, had dual POA, dual medical POA and executors. Some of my siblings made things difficult but tried to what she wanted as best as I could along with my nurse sister. I Have named 3 people specifically who can not make any decisions for me in my legal documents. Just to make sure my wishes are respected when some couldn’t during life.
When my Mommy brought all this up to me early on of the 20 years she was with me; I was really upset. But yes so important issues. I agreed with my Mommy but I told her I would not be on her will. I would take care of her only until her last breath. I was her power-of-attorney and her medical director. I was told that having two different people on these two documents could cause conflict. At the end, I was so proud, thankful, and blessed that my Mommy made known all her desires in legal form. She even prepaid all her funeral arrangements..
Your mom is so thoughtful. ❤️
Yeah, they come only when my mom nearly to die, in coma after I take care of her for more than 5 years. They just talk about her inheritance. Pissed me off until now. I fight til the end after my mom passed away. They don’t get anything.
I had family hovering around when they thought my mother was going to die because they were looking for something they thought she had. One family member interrogated each of us. Another spent the night a few days and rummaged through the house during the night. When my mother survived (and still survives), their “help” went away.
Sonya Jones understand indeed. Its not like I really want my mom’s inheritance so much, but to think they don’t deserve it, I give all of it to those who took care of her when she was alive.
Sonya Jones Don’t let them rummage next time call the police. They don’t live there and are trespassing if you tell them to leave.
Dennis Zadok I didn’t know that. Thanks for the information.
Fatin Husna Exactly.
I wish they would the second they come near me They’re gonna get dragged to hell and back
I heard that!
I have a medical power of attorney and his dnr. There is no one that can take him from me. He’s my husband of 31yrs and has been in my care 24/7/365 since 12/20/2014.
Oh, so many words I could say here!
As if caregivers don’t have enough stress. In the case of a dementia diagnosis the time of little or no contact or concern can span 10-20 years. If you haven’t given a damn for the last ten years don’t barge on in making absurd demands at the 11th hour, compassion doesn’t work that way. All they do is make a stressful role more stressful.
Add to this the fact that most 11th hour demands have zero to do with the loved ones welfare and everything to do with the absent persons own wants, it becomes a cruel and revolting situation.
Oh yes. I had power of attorney for my mom and was her primary care giver. My brother had medical power of attorney and scooped her up and into the nursing home she went, and he and the others,went back to their happy little lives, after accusing me if horrible things. Mom died in 6 weeks. She wanted to be at home, with her dog.
I’m so sorry I have similar story❤
I’ll never forgive them. We are in a small town, everyone knows me, what I did, the community was very involved. The “family” privately accused me of horrible things. No one in town will speak to them now. That makes me feel very good.
karma
Yes Tara White, it’s working in Buffalo!
How sad!!!
This is so sad Julie. The accusations of horrible things comes from their own guilt at being uncaring and negligent, so they project their faults onto you. I’m glad your community can see through that crap.
They went back to their ‘happy little lives’ but in reality how happy can they be with such cold hearts. You have memories to cherish of time with your Mum that they will never understand, and those memories are precious.
Frances Ryan may I share your response in my feed? It’s well said ❤️
Rebecca Sagona yep no worries
Frances Ryan Thank you very much!
I’ve been taking care of my 32 year old daughter alone, for years. I don’t see any of them barging in any time soon.
I’m basically going thru this right now, myself !!!!!!!
Sorry for the language but I’m having a really tough time and I’m angry at our families for caring so little
We had discussed with an advocate & had a DNR in place. Mom didn’t want feeding tube or other invasive measures. I had trouble explaining this to the siblings. My brother was late to the family conference about it & missed the discussion with Mom. The advocate talked with him. My sis didn’t come. Gave copies to them both. Months later, when Mom was in the hospital, sis’s husband questioned whether Mom had understood at the time. She did (I was there) and I wanted to follow her wishes. I let the hospital staff explain to them about ventilators & feeding tubes, because they wouldn’t believe info coming from me. There was no fighting. I had the Medical POA & could make the call, but waited for them to get caught up. It was the hardest thing I’ve ever done in my life – stepping back and not engaging in the drama that was trying to be created.
Hi Linda, it’s great to hear you successfully navigated the treacherous waters of end-of-life care. Getting help from a healthcare advocate, having hospital staff relay key information, making important decisions ahead of time, and giving everyone the opportunity to express their concerns before things get heated are all wonderful tips for avoiding family conflict. Thank you for sharing your story!
I am my husbands caregiver and all his boys are NO where to be seen. As soon as we got the diagnosis. At first I was stunned then disappointed and hurt and now just plain pissed. what legal things do I need to do in case they decide to become”GOOD SONS”?.
I had this happen while caring 6 years for my Dad and then recently for my Mom-where family comes in and demands what they want, not caring about what my Parents wanted or their wishes. For the last 2 years I have been fighting a Perjured (non)Emergency Temporary Guardianship that was worked on for over a month and left me off as Medical POA. SO now for the past 730+ days my Mom has been locked up. medicated & isolated against her said and known wishes. When I tried to set limits and boundaries as my Mom’s Medical POA it was wrong but it is now perfectly fine for the GAL who charged my Mom over $15,000.000 to see her 3 times to make much harsher recommendations that we must follow. One of them is to pay $50.00 cash to see my Mom for only 1 hour. Guardianship Abuse is a big problem in the through out the US. It is unbelievable what is allowed and tolerated treatment of our Vulnerable Elderly, especially in the state of Nebraska where the wishes of others have been put above the wishes of the Vulnerable Elderly person!