Follow
Share
Read More
Find Care & Housing
1 2 3
Do you have legal power to direct your mother's care? I can't imagine that hospice would accept your son's cancellation unless you do not, even then it is questionable. I would certainly talk to them. Your son is interfering with your mother receiving good care by not allowing you to rest. I think you should try and make sure you have control. I would also be concerned about your son caring for you if you need it. Many communities have agencies that provide support and guidance for people caring for seniors as well as the seniors. See if there is one you can contact, the hospice people probably know about that. I am hoping you are not caring for your son as well. Bless you, and take care.
Helpful Answer (4)
Reply to Moxies
Report

Why don’t you give him a scenario of what “could” possible happen... call him and tell him you hurt your back and he has to take you to the doctor! You are in a lot of pain and can’t stand up. Now what will he do? Sometimes (especially with men) they look at things one problem at a time whereas woman can multitask. See how he reacts to that situation and maybe you will get through to him that if you don’t take care of yourself things “could” happen. Best of Luck!!
Helpful Answer (4)
Reply to Onlychildbutnot
Report

Tell loving son to come take care of grandma himself for two days and you leave! That may shut him up.
I wonder does he lift a finger to help you in any way?
Helpful Answer (5)
Reply to InFamilyService
Report

If he feels THAT strongly about it then HE can come and take care of grandma for 4 days while you get away. I strongly suggest that you do not answer your phone when he is with her for this time period. Do leave written instructions and the 24/7 telephone number for Hospice. (He will need it)

He is completely wrong for calling you selfish.
Respite is one of the greatest gifts that Hospice offers. Among all the other benefits of Hospice Medicare pays for almost a week of Respite. All insurance should do this for caregivers! Given that it is covered you are almost crazy if you do not take advantage of it if it is needed.
Helpful Answer (7)
Reply to Grandma1954
Report

You are not selfish to get respite; you are making sure your mother is cared for while also caring for yourself.

It sounds like your son has some unresolved issues: with you, with death, with his grandmother, with control of life (COVID is making it tough on everybody)... I suggest you need a couple of sessions with your son and you talking with a counsellor. Ask him to list the problems he has with your grandmother being at hospice respite 2 days each week. Ask him what he would like to do to care for his grandmother so you can have some time off. You may need to set some boundaries about your son's involvement in your life - especially if he does not contribute to your income, his grandmother's care, or other needs. A counsellor can help you identify his "problem behaviors" and develop strategies for dealing with those behaviors when they crop up.
Helpful Answer (2)
Reply to Taarna
Report

Dont you love other people guilting you?Tell him since has so much to say about it, for those 2 days its his turn. The entire 2 days all on his own. PUT UP OR SHUT UP TIME.

He has no right to guilt you bc you need to decompress. Wrong! Now stop feeling guilty. Every time that thought comes into your head, tell yourself you are allowed your own time. Stop feeling guilty!!! Stop it in its tracks. You are a great daughter taking that on all by yourself. Even employees get to go home after their shift. STOP IT!
Id make him care for her those days without any interference from you. He'll back down. And probably never want to help. Or he says he can't hes a guy and thats his grandmother. To bad, do it any way.

Stop taking his abuse bc thats what it is.
Helpful Answer (4)
Reply to Jasmina
Report

I think your son has a lot of growing up to do. Only an immature person would not understand that a full time caregiver NEEDS respite in order to keep functioning (and I say this with no disrespect to your son). As they say..."walk a mile in my shoes", right?...so perhaps you should offer that two day time slot to your son, and tell him he is more than welcome to care for her himself so she doesn't need to go to Hospice house. Then it becomes "his" issue if he refuses. I'm sorry you're dealing with this.
Helpful Answer (5)
Reply to Demi53
Report

If your son is not the one taking care of her, it's none of his business.  Sorry but I have zero tolerance for family members who are not doing any of the caregiving acting like they have a say.  They don't.  Your son wants to keep his world small and secure...he needs to grow the  hell up.  You are not selfish.  Stand up for yourself and tell you son to shut it.
Helpful Answer (7)
Reply to Jamesj
Report
mommyskids Feb 25, 2021
totally agree, if he is not going to take care of her for a few days, he can pound salt; my son is just he opposite, he wants to get a HCA so i can get away for a little time, he understands and i love him for loving his mom and his grandma (also 95)
(1)
Report
See if he or another family would be willing to come and take care of her for a few days. I can totally understand feeling overwhelmed, burned out and in desperate need of a break. I was in a similar situation with my husband who had dementia. Because of underlying kidney disease he qualified for Hospice, although he didn't feel sick and wasn't in pain. However his behaviors became more impulsive, unsafe and I had to constantly watch everything he did. Hospice didn't provide any relief for me to even get away even for an hour or two so I could go to the store. I was totally burned out. I decided to let him go to Hospice house for a 5 day respite. But unlike you, my family thought it was a good idea.
He went at night, around 6pm. The next day I went to visit him and he was drugged. I asked what happened and they said he became agitated and they had to sedate him. They didn't give him a mild sedative, instead, their standard is Haldol , an antipsychotic! However he seemed extremely anxious with tics. I told them I refused to allow that medication. The following day, he was semiconscious. He couldn't open his eyes, eat or drink, just slightly raise his hand when I spoke to him. The staff said the doctor ordered Ativan and morphine. I asked why Morphine and they said for pain. But he NEVER complained of pain at home. They said his "condition" had changed and now he did show signs of pain. I should have taken him home immediately, but now he was bedridden and couldn't communicate. Regrettably, I half believed them and thought I would let him stay for a few more days. The only other choice was placement in a nursing home or to come home. I thought perhaps his condition would improve, but it didn't. They allowed him to stay 7 days instead of 5. On the 6th day, they had him dressed in his street clothes and the next day he passed away.
I tell you this because you have no control over what can happen. If you do decide to place her in respite, speak to the doctor about what medications are allowed and what their side effects are. If she is a compliant person, and can communicate, then she should be ok. Many people go into respite care with no problems. Just iron out a treatment plan ahead of time.
Helpful Answer (3)
Reply to caring41
Report
KaleyBug Feb 25, 2021
So sorry this was your experience. I have heard this same story from other. The parent was fine when they went in. Then drugged within the first 24 hours and passed within days. Just remember you did what you thought was best for him and yourself at the time. My mom was hospice at home. I still regret that I was not there when she died. I was minutes maybe seconds to late. I had spent each night there before she passed because I knew she was getting closer to her time. That last night I told mom I was really really tired and I was going home to get a good nights sleep. I stayed with mom until she fell asleep and then I left. I checked the camera at 4 am mom was still breathing. I should of gotten dressed and walked over. I didn’t I went back to sleep. I walked in at 8am and knew mom was gone or close to being gone. She was warm but not responding. I finally came to the conclusion she did not want me there when she passed. I struggled for days, my decision to not stay that night.
(1)
Report
See 1 more reply
Mainly because a Hospice is a place where you send someone to live out their final days before they die. If your mother is ready to die now, then the hospice is where you place her. There are also hospice services in Hospitals as well as in-home Hospice care. You can always reach out to the hospice network to find the best match for you and your mother's given situation and or condition. In addition, you are her daughter and you are the primary care provider, so your son has no said so in any of your mother's matters. He most likely thinks you are giving up on your mother, but what he does not understand is all the hard work and great pain and difficulty, you as the primary care provider are going through.
Helpful Answer (2)
Reply to Alphabase
Report
Grandma1954 Feb 25, 2021
Hospice is not a PLACE
Hospice is where ever the patient calls home.
There are In Patient Hospice Units. These are places where a patient goes to manage pain, sometimes for respite. Or in some cases where family does not want the patient to die at home (usually a home where there are young children).
The Goal of Hospice is to care for your loved one and manage pain and symptoms.
They prefer that the patient is at home but "home" is also Assisted Living, Memory Care, Skilled Nursing facilities.
Again, and this is important Hospice is not a PLACE.
a bit of history, Hospice is from Latin Hospitum. Means Hospitality or place of rest and protection for the ill and weary. Originated in Malta 1065. Dedicated to care for ill and weary on route to or from the Holy Land.
(3)
Report
There is absolutely nothing wrong with that. You need to take care of yourself physically and mentally or you won't be able to take care of your mother. He sounds very selfish and like he has no clue what it's like caring for someone 24 hours a day. Until he walks in your shoes he has no right to make comments other than supportive positive ones. Take care of yourself.
Helpful Answer (6)
Reply to broncomeemaw
Report

Does your son even do anything to help you care for your mother? If not, bust his butt and make him help for a week or two when she gets back. He'll change his tune real quick.
Helpful Answer (9)
Reply to Hiimwes
Report

Tell your son if he so passionate about you not taking a 48 hour break from total caregiving, then he will have to make arrangements to stay with his grandmother. Let him know you are at a breaking point and need help. He sounds very selfish and immature. It is obvious he has not had many life experiences. Do not let him make decisions for you that affect your own health and well being. If he refuses to take care of her...go right on and place in the hospice facility for 48 hours. He needs to understand that he is creating unnecessary drama!
Helpful Answer (11)
Reply to Sunnydayze
Report

11 years ft caregiver ? and no break ?!? I find it a miracle you are still breathing ! You definitely need the time off. Your son can then take care of his Grandmother for two days a week. That way he can increase his generosity towards the both of you. If not, take advantage of the hospice house and your son can go there to help granny. Get time off and take care of YOU ! it is about time. :) God bless you. Cecilia
Helpful Answer (8)
Reply to Cecimerce
Report
caroli1 Feb 25, 2021
It's not two days a week, as has been pointed out; it's two days total in 11 years+!
(3)
Report
Hospice House Respite is available for a reason. I'm happy for you that you are able to get a turn using it. You should use it again if you have the chance to do so. A break from care taking can "save your bacon."

If your son were your caretaker in a similar situation, he'd probably be looking for placement for you by the third day.

Enjoy your break. Take advantage of Respite Care whenever you can.
Helpful Answer (4)
Reply to RedVanAnnie
Report

Oh, my, please do not beat yourself up! You are not horrible or selfish. Has your son stepped in to help take care of his grandmother? Does he know who hospice is? Families should come together in times like this. When they do not, there is Usually underlying circumstances/feelings.
Being a caregiver is physically and mentally draining. In order to be there for your mom, you need to take care of yourself. In my opinion, your son needs time to think about his behavior towards you. I am sure it hurts but it is a fact, caregivers need and deserve support.
Helpful Answer (2)
Reply to PattiDK4
Report

It may be helpful to get an attorney or someone to read the contract to determine whether your son had the power to remove your mother from the respite list. Also who pays for it if she did stay there.

Is she mentally competent at all? If not, petition to be her guardian. There are two kinds of guardianships: guardianship of personal estate and guardianship of finances. You can be guardian of both if your son is not to be trusted in either capacity.

Somehow I suspect one reason your son may be upset that it costs money or that you will leave her there forever, thus draining her estate even more.
Helpful Answer (7)
Reply to kahill1918
Report
Grandma1954 Feb 25, 2021
Medicare pays for Respite for Hospice patients so there is no cost to the family.
(2)
Report
Unless he's helping, with meal preparation, laundry, medication (if she takes any), keeping her entertained, then no. Do Not feel bad. No one but us, who is with someone for 24 hour care knows exactly what it takes.
There have been times where I couldn't remember when I had a shower last.
Helpful Answer (7)
Reply to DarleneLeslie
Report

As a trained social worker, I am greatly concerned that your son was able to speak on your behalf and cancel this respite. If he does not have legal authority to do this, you need to report the social worker immediately. This is important to not only you, but anyone else this social worker serves. There are proper chains for handling situations such as this, and it would appear the scheduled respite should have never been cancelled without the social worker speaking to you directly since you scheduled it.
Helpful Answer (9)
Reply to guiltridden64
Report
Grandma1954 Feb 25, 2021
I did not get that he cancelled the Respite just that he is calling his mom selfish for placing Grandma in Respite. If I misread or mistook what she said in the post I am sorry.
(1)
Report
See 1 more reply
No, you are not selfish or horrible. If your son is so upset, maybe he should have stepped up and assisted you for the last 11 years. You deserve a break from all work you have done for your mother.

Your son is the one being selfish and horrible. We're talking about 2 days. You are not abandoning her; you are getting a well deserved break. Do not feel guilty, send you mother to respite care and recharge your batteries. Do not take calls from your son while on your break - maybe until he has grown up and acts like an adult who cares and loves his mother and is supportive of her and his grandmother.

Good luck and may God Bless you and your family.
Helpful Answer (8)
Reply to cweissp
Report

You are making yourself feel terrible. Your son, for his own reasons, is saying his truth, whether it’s true or not. It’s NOT your job to make it yours.

If he is not sharing care time with you tell him you’re not interested in listening to his complaints.

ENJOY YOUR 2 days. YOU NEED GOOD CARE TOO. Good for you for realizing that.
Helpful Answer (8)
Reply to AnnReid
Report
gdaughter Feb 25, 2021
Ann, I'm sitting here eating some sushi with tears in my eyes reading your response. Some people who don't do it, even family members we keep informed, just don't realize the toll of caregiving. Even when we are not (if fortunate) doing hands on personal type care, our minds are so full of being on call 24/7 watching for safety issues, cooking, planning, shopping for meals, laundry, cleaning, bill paying etc. There used to be an expression that housekeeping, if done correctly, can kill you...and I have adjusted that to sub the word caregiving. And I am, no pun intended, living proof of that. I am the worst personality probably for being a caregiver, while also being the best, because I care and am perfectionistic, wanting to be and do the best. In two days it will be the 5 month anniversary of my survival of having an aortic dissection which is almost always fatal. No doubt my sense of needing and getting help, was a contributing factor to my survival (not to mention being in Cleveland and helicoptered to the Cleveland Clinic where the top heart people are who did surgery and saved me). We do need to take care of ourselves. To that end and to assure good or improved nutrition for my mother age 98 and with dementia, I began getting her meals on wheels last week. A tepid meal is delivered around noon time in an alluminum tin pan that needs to be replated for microwave reheating. So when my 103 old alert and capable father approached me in a captive moment to ask me if I was going to get the meal and reheat it for her, I reached the breaking point, and left him a note because....wait for it.....I SAID NO. He is constantly making demands...of ME....and it's easy because his whole life the women folk have done for him and looked out for him. From his mother and his sisters (now long deceased) to his wife. I'm easy prey as we all live interdependently under the same roof. But I finally said what had been held in for far too long...HE was a contributing factor to my high blood pressure which is believed to be a factor contributing to the aortic dissection. Yes it did anger me when I learned more about it because although I played a role in all of it, I felt like the upheaval in my life, the terror of illness, surgery etc, was a direct result of HIM. He came back at me when I said NO to say I did not make things easy!! And that was the last straw for me. I had said NO primarily because I didn't want to have to be on guard for the delivery. I AM supposed to be working remotely in an effort to hold my job which I expect to return to. So there will be a day when I will not be home and easily accessible to get the meal and reheat it. He on the other hand is in excellent physical shape, makes sure he eats, sleeps, exercises etc and he is or can easily be available to do this task. I told him I was not responsible for HER, but of course that is indeed part of the stress, as I feel responsible to look out for both of them. To make sure doors are locked, lights off etc, safety mechanisms engaged. I do not intend to be in a hospital or rehab ever again. EVER. AND I hate taking pills...so I am determined now to look out for ME. Bless all of us. WE love them, we will take care of them, but they do not have a right to totally destroy our lives and any chance for us to enjoy a bit as we get older ourselves!
(4)
Report
Dear Artist69, I commend you for your strength in caring for your mom for 11 years. I took care of my mom for 7 years with no help too. As others have stated and I agree, your son is wrong for not supporting you in every way possible. That being said I don’t understand how he was able to have an effect on the respite care you had already arranged. If you have POA or any type of Guardianship over you mother then he has no say so when it comes to decisions that you make. The social worker from hospice should have told him that instead of changing what you had already setup. You shouldn’t have had to call them and beg to keep the original agreement. If all decisions for your moms care are your responsibility then stand your ground when needed. If your sons abuse gets so bad or he continues to interfere with what you need to do, the maybe you should consider a restraining order against him. Could be just the threat of such action might make him back off. But be willing to follow through if necessary. Bottom line how ever is be strong, stand your ground when you need to. My thoughts and prayers are with you. Remember you are not alone. There are many folks here to offer advise and prayers.
Helpful Answer (2)
Reply to DRGnSOCA
Report

Why don't you talk to your son to find out his concerns with the Hospice House? He may have very valid reasons to be concerned. After all ...They killed my sister by dehydration! Decided it was time for her to die!!! Some of these places are just fine, but many are NOT!

Perhaps you should look into home care. There are people who will come into your home that can take care of her while you get some things done for yourself. It is a far better option than making her live somewhere else for 2 days. You must always stay on guard for your family and those you love.
Helpful Answer (1)
Reply to FamilyNeeded
Report
KaleyBug Feb 25, 2021
I was thinking the same, he is probably afraid she will not come out and dye before her time. My mom made it 8 months and the best man in our wedding lasted 12 months on hospice at home. My uncle and a few friends only lasted 2-3 days in inpatient hospice. It seems inpatient is more likely to give something that makes them sleepy and they do not get hydrated or food routinely. Its more like if they ask for food or drink give it, give it to them. If not let them be.
(1)
Report
See 3 more replies
Is he willing to take care of Grandma while you get some respite? If not, then he does not get a say in this. I am so sorry he is not giving you the support you deserve.
Helpful Answer (7)
Reply to beth14
Report

Not sure how old your son is. If he's young, he is probably just scared that something could happen to her. Sit down and have a conversation with him and let him know that she will be taken care of. If he is older, you need to explain that caregivers must also have days off and vacation so that they can continue to care for the LO. Anyone on this forum will tell you that full time caregiving takes a toll physically and mentally. It's not that we don't love them, it's just that our bodies are designed by God to having resting periods and rejuvenation.
Helpful Answer (1)
Reply to lindberg62
Report
SFdaughter Feb 25, 2021
Her mother is 95. He's an adult.
(5)
Report
How does you mother feel about living somewhere else for 2 days every week? That must be difficult for her. I don't think your son sounds like he is being abusive. It sounds like he is concerned. Try finding care that can come into the home instead. That is what usually works best for them and you!
Helpful Answer (1)
Reply to FamilyNeeded
Report
JoAnn29 Feb 25, 2021
She is only getting 2 days, not 2 a week. When on in home Hospice they allow for respite care because the family is still doing 24/7 care. An aide is only provided maybe 3x a week for bathing. A nurse only checks in 2 or 3 times.
(10)
Report
I found out just how important respite is when I cared for my father. It was a lifesaver. Caregivers can get very burned out! Your son should not criticize unless he’s willing to take on your job for 2 straight days to give you a break.
Helpful Answer (6)
Reply to Dizzerth
Report

Your pardon but my mother's time with hospice was abysmal-- they did not do much of anything for her but more to her--- I would trust them to help-- however assisted livings also have respite programs.. you might wanna go save her from the evil ones and take her where they will at least spend some time with her. I know you are pooped out--- and it is always the ones who never help that offer the more advice at the wrong times... good luck.
Helpful Answer (1)
Reply to DugganB
Report
Daughterof1930 Feb 25, 2021
One person’s negative experience does not equal all being the same. “Save her from the evil ones” assumes this lady hasn’t looked into the care and vetted the help she so badly needs
(4)
Report
See 2 more replies
You certainly deserve a break!

Unless your son is willing to step in and care for his grandmother, then he needs to butt out! Period!

There is absolutely no reason for you to be questioning yourself or feelings of any guilt regarding a much needed break.

I would be questioning why he is not showing concern for your needs.

You are a human being that requires proper rest in order to be able to function well. Two days is hardly extravagant!

Please enjoy your time off!
Helpful Answer (9)
Reply to NeedHelpWithMom
Report
BCagain Feb 25, 2021
Pretty much what I was going to say. If he is capable and willing to do the job, then he should be offering to step up.. Other wise, shut up..
Step up or shut up.. That's a worthy motto.
(6)
Report
See 1 more reply
If it hasn't already been said, "UNLESS YOU HAVE WALKED IN THEIR (CAREGIVER) SHOES, NO ONE HAS THE RIGHT TO CRITIZE". You deserve a respite whenever you feel you need one!
Bless your heart 💓, take care.
Helpful Answer (7)
Reply to naia2077
Report

1 2 3
Ask a Question
Subscribe to
Our Newsletter