WWYD? Caring for aged MIL

[Lawana]

MIL 84 lives with us and is nearing the end of her life. She is bedridden for the most part, only getting up to use the bedside commode, and that with assistance.

 

The issue is that she prefers me to be the one to assist her, even when others (dh, her son, and dd and ds) are willing and able to do so. Not just for toileting, but other things as well. She will put off taking pain medication until I am present and available to give it. Even though pain is her biggest issue.

 

I get feeling more comfortable with one caretaker, howvever she has come to define the way *I* do things as the *one right way*, even though they are for the most part arbitrary. They are just the way I happen to do things. I feel pressure to be available at all times to avoid the stress that comes with her discontent with assistance from others.

 

Believe me, I have great empathy for her position. She only wants to be comfortable and secure in a time when she knows she doesn't have much time left. So I am conflicted. If I knew it was going to be "x" amount of time, I would just suck it up and deal. But there is no way of knowing whether she will die tomorrow or 2 years from now. I am not willing to put my life on hold in order to be available around the clock for the next 2 or more years. I would do it for the next 2 months. I have two teenage children that need to go places and do things. I do take them places, but I'm always aware that mil is waiting for me, and the pressure to be there for her is relentless.

 

If you've gotten this far, thank you. Please share your perspective.

[Mommyfaithe]

Well, you must be doing one great job!!!!! Hugs and I know somewhat how you feel after caring for my own mom. You need to be there, yet also prioritize your kids. Balancing act....no fun. I guess mil will have to either accept someone else's care when you are not there or suffer the consequences. It is not like you are leaving her to her own devices, or to sit in her own mess.....you are being responsible. It is like when you have a child and they have to stay with a babysitter. They would prefer you....but they just have to make do with the babysitter....their attitude about it needs to be their choice.. Sorry you are having a difficult time....you are a good daughter!!!!

[Annie]

I don't have any real advice, but I couldn't read without sending hugs and good thoughts your way. You're a wonderful DIL and a strong woman. I watched my parents care for two of my grandparents at the ends of their lives, and the stress and workload is tremendous. Please allow yourself time to rest and recharge. :grouphug:

[Lawana]

Well, you must be doing one great job!!!!! Hugs and I know somewhat how you feel after caring for my own mom. You need to be there, yet also prioritize your kids. Balancing act....no fun. I guess mil will have to either accept someone else's care when you are not there or suffer the consequences. It is not like you are leaving her to her own devices, or to sit in her own mess.....you are being responsible. It is like when you have a child and they have to stay with a babysitter. They would prefer you....but they just have to make do with the babysitter....their attitude about it needs to be their choice.. Sorry you are having a difficult time....you are a good daughter!!!!

 

Sometimes I think I do too good of a job. If I weren't quite so accomodating, maybe she wouldn't think my way best! On top of trying to balance her needs and my kids' needs, I also have my own mother's needs to consider. She has her own health issues, and right now, she is getting suffled to the bottom of the deck. Talk about guilt.

 

Thank you for your concern and encouragement. It means a lot.

[Lawana]

I don't have any real advice, but I couldn't read without sending hugs and good thoughts your way. You're a wonderful DIL and a strong woman. I watched my parents care for two of my grandparents at the ends of their lives, and the stress and workload is tremendous. Please allow yourself time to rest and recharge. :grouphug:

 

Thank you so much. I recognize the need to rest, and that is exactly where the difficulty lies. If I have it in the back of my mind that mil has not had her meds because she is waiting for me to return, I have a hard time truly relaxing.

[Melissa in Australia]

:grouphug: :grouphug: :grouphug:

I have worked in Aged care. I feel for you'

What you need is regular respite. She will get use to somebody coming in and caring for her once a week ( or fortnight or whatever) and you will feel refreshed. I know it's hard to not feel guilty about leaving her for a day or so. But you will burn yourself out if you don't

:grouphug: :grouphug:

[Impish]

I'd nicely, but firmly, decline to be the sole caregiver. Explain to her that you simply cannot manage it, it's too much for one person. I'd look into some profession in home health care.

 

I used to do home care. I've seen the toll it takes on caregivers, and it's better to set some boundaries now, before you end up burned out and ill yourself.

 

It's not about not caring, or not being empathetic, it's about finding a healthy balance.

 

Also, unless she's dealing w/dementia of some form, realize that she's making these choices for herself. It's not that there isn't anyone else capable of doing x,y,z for her, but that she's refusing to allow them to. That's her decision. She can just as easily choose to allow others to help her.

 

I think a professional would probably be easier for her to accept...that's what many clients told me. I know for myself, I had no problem taking care of other ppl's grandparents, but the idea of bathing *my* grandmother just...urgh. Would have been *very* difficult on both of us to be in that position.

[Lawana]

:grouphug: :grouphug: :grouphug:

I have worked in Aged care. I feel for you'

What you need is regular respite. She will get use to somebody coming in and caring for her once a week ( or fortnight or whatever) and you will feel refreshed. I know it's hard to not feel guilty about leaving her for a day or so. But you will burn yourself out if you don't

:grouphug: :grouphug:

Thank you.

[Rosie_0801]

If someone else is trying to administer pain relief, would it go down easier if you wrote a note to go with it?

[Lawana]

My grandfather was at home, bedridden for the last 3 months of his life. My mother was the one who took care of everything. She would only get a break when I would come there on the weekends, as I had a full time job during the week. He preferred for the two of us to take care of him, because like your MIL, he trusted that we were doing it right. It wasn't that he thought anyone else was wrong...he just trusted our routine. Can you tell your MIL that you have shown other people how things need to be done, and that you know that they love her just like you do? That was the ONLY was grandpa would let the hospice nurse take care of him. He had to be 100% sure that she was going to be doing things exactly like we did.

Isn't it interesting how having things done just exactly the "right" way becomes so important? I wonder why that is.

 

Thank you for your kind words.

[LibraryLover]

My MIL was much more relaxed and secure with a particular caregiver. MIL looked to one particular person at the end, although we all helped her as we could. We all knew if was too much for one person, so we did switch off, and with many words of kindness to my MIL. She was as weak as a toddler, but still had her faculties and voice. "Where is Marisa? She said she would put me to bed! Get Marisa! etc" In the morning, she had already forgotten the eve before. :( We care for the very sick and elderly as we care for our infants-- with an open and loving heart, hoping for nothing in return. This is about comfort. My MIL was a kind and loving person. I understood why she wished she didn't have to be a burden. In her pain, she forgot one person caring for her was too much. She was too sick to be rational, so we took care of it/each other.

[Lawana]

I'd nicely, but firmly, decline to be the sole caregiver. Explain to her that you simply cannot manage it, it's too much for one person. I'd look into some profession in home health care.

 

 

And that's just it. I do try to decline that role. Then I see how how upsetting it is to both her and whomever else is trying to help. And I waffle.

 

Professional care costs $25 per hour. We don't have the money to hire care on a regular basis. She gets just enough social secuity to cover her prescription medications and buy a few necessities. That's why she lives with us.

[Lawana]

My MIL was much more relaxed and secure with a particular caregiver. Often , I helped her, but while I knew she loved me, she preferred a particular someone . MIL looked to one particular relative to do certain particular work at the end (and 'fairness' was not part of the equation, although we all helped as we could). We all knew if was too much for one person, so we did switch off, and with many words of kindness to my MIL. She was as weak as a toddler, but still had her faculties and voice. "Where is Marisa? She said she would put me to bed! Get Marisa! etc" In the morning, she had already forgotten the eve before. :( We care for the very sick and elderly as we care for our infants-- with an open and loving heart, hoping for nothing in return. This is about comfort.

I get it. I must be a horrible person, because the motivation to care for my infant children was deeply ingrained within me, but I lack the same deep motivation to care for the mother of my husband. Don't get me wrong. I do what I can, otherwise she'd be in a nursing home. But it's just not the same. If only I could summon that same intensely held devotion.

[Lawana]

If someone else is trying to administer pain relief, would it go down easier if you wrote a note to go with it?

Thank you, I hadn't thought of that.

[Impish]

Ouch. I'd ask and see if social services has any suggestions or alternatives for you. I don't know how it works where you are, but here there are programs to give respite care to family members. Government figures, rightly so, that it's cheaper to provide respite than care beds. Not that the hrs are anywhere near what they *should* be, but it's better than none at all.

 

You need to stand firm.

 

I'm not saying this to be mean, or harsh, or uncaring. The reality of it is, caregiver burn out is very, very, very real. You can seriously end up in a situation where you're neither physically or emotionally able to provide care for her any more. By insisting that others are able to participate, you're helping to ensure that it's possible for her to remain in your home.

[Impish]

I get it. I must be a horrible person, because the motivation to care for my infant children was deeply ingrained within me, but I lack the same deep motivation to care for the mother of my husband. Don't get me wrong. I do what I can, otherwise she'd be in a nursing home. But it's just not the same. If only I could summon that same intensely held devotion.

You're not horrible at all. Caring for an elderly relative and caring for your babies is COMPLETELY different. Eons apart. Seriously. It's not the same. Period.

[AK_Mom4]

the wonderful hospice folks were a life saver for me when my mom reached this stage. My mom also had a home health lady who came in to help her bath 3 days a week, giving me a break of several hours on those mornings.

[Marylou]

Yes, it is completely different. The children (usually) become more and more independent while the elderly get worse and worse. My 88 y.o MIL w/ end stage Alz lives w/ us (along with 95 y.o. FIL). She has been on Hospice for a year, so we have help 3days/wk. I can't imagine having to do everything at this stage (in bed/diapers 24/7).

 

Does she take meds for Alz? My MIL had extremely awful back pain while taking Aricept and Namenda (sorry, I can't remember the spelling).

[LibraryLover]

I get it. I must be a horrible person, because the motivation to care for my infant children was deeply ingrained within me, but I lack the same deep motivation to care for the mother of my husband. Don't get me wrong. I do what I can, otherwise she'd be in a nursing home. But it's just not the same. If only I could summon that same intensely held devotion.

 

 

 

I understand. I was trying to get across the fact that several of us shared the care, even as she asked for a particular person. One person can't do it.

[Lawana]

I'm going to get hospice involved. She doesn't want it, but i'm going to insist.

 

No, she doesn't take meds for Alzheimer's. She has severe osteoporosis, and is constant pain from that, and has been for quite some time.

[LibraryLover]

I went back to bold how we handled it. I think the OP misunderstood.

 

I tried to relay the fact that we all took turns helping, even as she asked for a particular person. ONE PERSON can not do this alone. If you have a sick infant, you get help from doctors/nurses/friends.

 

I think Hospice is an amazing resource. We got tremendous help from them.

[Marylou]

Yes, call hospice.

 

What is the worst thing that can happen if someone else bathes/gives her meds? When the pain is bad enough, she will take the relief from anyone. Hang in there. I (and many others) truly know how hard this is :grouphug: .

[Lawana]

I went back to bold how we handled it. I think the OP misunderstood.

 

I tried to relay the fact that we all took turns helping, even as she asked for a particular person. ONE PERSON can not do this alone. If you have a sick infant, you get help from doctors/nurses/friends.

 

I think Hospice is an amazing resource. We got tremendous help from them.

Thanks for the clarification. I did think at first you were implying it was the same as caring for an infant, when in fact, it is not. Dd was pretty needy, and I spent hours a night walking her, sometimes with no relief. I am in no way mentally prepared to do that level of care with mil. In the present case, dh and dc are present and willing to help, but if I am here, it defaults to me, because she asks for me. If I'm not, she'll often hold out until I get back. So even though I'm technically not doing this alone, it approaches that.

 

I do appreciate hearing from those who have walked this path.

[LibraryLover]

Thanks for the clarification. I did think at first you were implying it was the same as caring for an infant, when in fact, it is not. Dd was pretty needy, and I spent hours a night walking her, sometimes with no relief. I am in no way mentally prepared to do that level of care with mil. In the present case, dh and dc are present and willing to help, but if I am here, it defaults to me, because she asks for me. If I'm not, she'll often hold out until I get back. So even though I'm technically not doing this alone, it approaches that.

 

I do appreciate hearing from those who have walked this path.

 

 

I tried to be as clear as possible. I'm sorry it didn't come across that way. My MIL was an amazing and loving person. Her death was very difficult. My FIL, a most wonderful human being, had a long and terrible death. The family/siblings took care of him best we could, also taking turns. We used hospice towards the end. None of us felt guilty about that. We gave to them what they gave to our family (TLC) for as long as we could. My MIL didn't take as long to die as my FIL. But for each of them, the (most) terrible end was over within 2-8 months. Caring for an adorable newborn baby is much easier. Changing diapers on a full grown adult is not cute, no matter. We did the best we could.

[Farrar]

I think I would try to make it clear to her when you will be there so she has security and foreknowledge of that as much as possible and then set aside the times that you simply won't be on call. If you do that, maybe it can become more routine for her that between such and such hours a day you're not there and others are on call for her instead, but that she can look forward to you doing it the way she likes again in the morning or whenever.

 

Hugs to you. I'm sure this is very tough.

[Impish]

Another idea:

 

have your dh, your ds, attend w/you when you're providing care, and write EVERYTHING down. Also, walk them through, step by step by step providing care. That way, they have written instructions, as well as hands on training.

 

That way, MIL may be reassured that they will do things the 'right' way.

[clarkacademy]

MIL 84 lives with us and is nearing the end of her life. She is bedridden for the most part, only getting up to use the bedside commode, and that with assistance.

 

The issue is that she prefers me to be the one to assist her, even when others (dh, her son, and dd and ds) are willing and able to do so. Not just for toileting, but other things as well. She will put off taking pain medication until I am present and available to give it. Even though pain is her biggest issue.

 

I get feeling more comfortable with one caretaker, howvever she has come to define the way *I* do things as the *one right way*, even though they are for the most part arbitrary. They are just the way I happen to do things. I feel pressure to be available at all times to avoid the stress that comes with her discontent with assistance from others.

 

Believe me, I have great empathy for her position. She only wants to be comfortable and secure in a time when she knows she doesn't have much time left. So I am conflicted. If I knew it was going to be "x" amount of time, I would just suck it up and deal. But there is no way of knowing whether she will die tomorrow or 2 years from now. I am not willing to put my life on hold in order to be available around the clock for the next 2 or more years. I would do it for the next 2 months. I have two teenage children that need to go places and do things. I do take them places, but I'm always aware that mil is waiting for me, and the pressure to be there for her is relentless.

 

If you've gotten this far, thank you. Please share your perspective.

 

 

This is my thoughts that is all and I am not judging. I guess we will all do what we feel we can at times like this.

 

To the bolded, didn't she I would guess put her life on hold for your husband? When he was a small child didn't she drop everything to care for him for years? I know I may see things in a different way than you it is just my opinion is all, but from where we come from we take care of pour own. We don't do homes or hospice or anything like that. I can understand ypour feelings but as a person who watched her gramma die in her bedroom I can see the other point too.

 

I never would have expected my mom to do things for me when my gramma was sick. I just thik that someone dieing shouldn't be looked at as an inconvience to family because family is really all that matters.

[Twigs]

:grouphug: :grouphug: :grouphug: You are not a horrible person. :grouphug: :grouphug: :grouphug:

[Impish]

This is my thoughts that is all and I am not judging. I guess we will all do what we feel we can at times like this.

 

To the bolded, didn't she I would guess put her life on hold for your husband? When he was a small child didn't she drop everything to care for him for years? I know I may see things in a different way than you it is just my opinion is all, but from where we come from we take care of pour own. We don't do homes or hospice or anything like that. I can understand ypour feelings but as a person who watched her gramma die in her bedroom I can see the other point too.

 

I never would have expected my mom to do things for me when my gramma was sick. I just thik that someone dieing shouldn't be looked at as an inconvience to family because family is really all that matters.

I think you're being unrealistic about the reality of caregiver burn out. There is a MASSIVE difference btwn taking care of an infant/child and taking care of an elderly person. MASSIVE.

 

Having someone else share that load, be it family or hired help, makes a HUGE difference, even the ability to keep someone at home, vs needing to put them into hospice/care.

 

Expecting 1 person to be the sole caregiver, 24/7, is putting the caregiver's health at serious risk. Physically, and emotionally.

 

Yes, ppl can be cared for, and cared for well at home. However, it needs to be a team effort.

[Sandsam]

Here is my 2 cents. My mom passed away one year ago. She was in a nursing home for a few months and I considered bringing her into my home - with hospice care, not just me.

 

The doctor at the home, an amazing man with years of experience in eldercare and elder death, counselled me NOT to bring her into my home. Reasons included the enormous stress, the disruption to family schedules, and the long term impact to the kids of watching someone die. What clinched it for me: He said he would never want his kids caring for him in his old age. He brought his children into the world to go forth with their own lives, not to care for him. (His saying this was more impactful than my writing it.)

 

I opted not to bring my mom into my home. It was the right decision for us.

 

<Hugs> to you on your decision. Please consider your family as well as yourself. Hospice / nursing homes know how to care for the elderly. My mom passed with me at her side. The beautiful people in the nursing home sang to her. I know she had the best of care.

[Mrs Mungo]

I agree that you can't do this alone. I agree with calling hospice and finding a person or two with whom your MIL will be comfortable. It is very easy to burn out as a caregiver.

[Halftime Hope]

This is my thoughts that is all and I am not judging. I guess we will all do what we feel we can at times like this.

 

To the bolded, didn't she I would guess put her life on hold for your husband? When he was a small child didn't she drop everything to care for him for years? I know I may see things in a different way than you it is just my opinion is all, but from where we come from we take care of pour own. We don't do homes or hospice or anything like that. I can understand ypour feelings but as a person who watched her gramma die in her bedroom I can see the other point too. Clarkacademy, it sounds like you may misunderstand the concept of hospice. Hospice care can take place in a facility or in the home in which the patient is residing.

 

I never would have expected my mom to do things for me when my gramma was sick. I just thik that someone dieing shouldn't be looked at as an inconvience to family because family is really all that matters. The OP did not say that, she said that she needed help balancing the needs of ALL those who need something from her. The crux of the concern is that others are willing to help, but the patient isn't willing to accept help from the other family members who are trying to "take care of their own."

 

Like others have suggested, the patient may be more comfortable with one caregiver, but what she needs is too much for the OP to manage given her own children's needs.

 

 

 

Hugs for the OP as she negotiates help.

[clarkacademy]

I think you're being unrealistic about the reality of caregiver burn out. There is a MASSIVE difference btwn taking care of an infant/child and taking care of an elderly person. MASSIVE.

 

Having someone else share that load, be it family or hired help, makes a HUGE difference, even the ability to keep someone at home, vs needing to put them into hospice/care.

 

Expecting 1 person to be the sole caregiver, 24/7, is putting the caregiver's health at serious risk. Physically, and emotionally.

 

Yes, ppl can be cared for, and cared for well at home. However, it needs to be a team effort.

 

I understand there is a difference as I have done both. I worked in a nursing home and I have 4 kids so I do understand that. I also know that no one person can do it alone it was what I bolded that sounded unfair in my opinion. I wasn't judging or being mean or talking from a point of view I knew nothing about. No one chooses to die sick and drawn out. I was basically saying that sometimes it is hard but we do what we gotta do for our family.

 

It was the whole her dieing may take longer than is convient and the OP couldn't put her life on hold that sounded harsh. No one wants to be a burden. Life is not always on scheduled the way we want. Yes she should have help and there is nothing wrong with that. I just can't imagine looking at a loved one thinking your death is a disruption to my life. I also come from a way different family we don't look at things the way most people do. There were certain things other caregivers could not do for my gramma it was just that simple.

 

She is dieing, treasure the time you have, be grateful you can help, yes share the effort but don't look at it like a burden to deal with.

[Laurie4b]

I think the part I would accommodate her with is the commode help issue. I would not want a son or grandson to assist me for male/female privacy issues. But for the other stuff, like taking pain meds, I would try to help her be more flexible.

 

You sound like an awesome d-i-l! Maybe she is just grasping onto you for security. I might ask someone who works in geriatrics for some guidance in helping her expand her sense of security with you to others in the family.

[Impish]

I think the part I would accommodate her with is the commode help issue. I would not want a son or grandson to assist me for male/female privacy issues. But for the other stuff, like taking pain meds, I would try to help her be more flexible.

 

You sound like an awesome d-i-l! Maybe she is just grasping onto you for security. I might ask someone who works in geriatrics for some guidance in helping her expand her sense of security with you to others in the family.

 

While I totally agree w/the comfort/privacy issues, being on hand for commode use means being available 24/7, and therein lies the problem.

 

Please, OP, contact your Dr, social services, and see if there isn't some sort of help available that won't cost you $. A female caregiver would enable your MIL to not deal w/the gender/privacy issue, while enabling you to get some respite.

[Plink]

Agreeing with previous posters. Working in a nursing home, or having kids is VERY different from taking care of a dying family member at home. Kids grow up and learn to do for themselves, the elderly only need more and more assistance as time goes on. Nursing home workers get to go home and rest, family members do not.

 

OP, ((hugs)) I have been in your shoes and it is very, very hard. I decided to have a heart-to-heart with Pop and let him know that I simply couldn't be at home all day every day. It was a hard conversation to start, but it ended with us both feeling much better about our living arrangements, and him being more accepting of help.

 

We did not call hospice, and that is my one regret. Our entire extended family was completely burned out with his care (not him, his care) by the time he passed.

[laf919]

I would strongly suggest hospice care - around here, the local hospice organization primarily supports families in caring for their dying family members at home or provides extra support to those already in a nursing home. They do have a small in-patient unit, but that is mostly used for occasional respite care for families (i.e. patient goes to stay there for a weekend when the family caregivers are going away or have a busy schedule and can't provide the needed level of care for a few days). Some patients do go there for the last few days of their life, but not all. Depends on the needs of the patient and family.

The reason I suggest hospice so strongly - and agree with others suggesting it - is because they are so skilled at helping patients and families face death and make decisions. It is overwhelming emotionally, physically, mentally, to face death - especially in our culture that spends so much time and energy avoiding it. It is a burden to face - and can be heavy. A not well-known fact is that caregivers of those who have chronic illnesses - including dementia and generally slow deaths - are at a higher risk of death than the patient. That is how much of a strain it is - it can literally kill you. Any caregiver needs support - it is a matter of life and death. And hospice can provide much needed support to the caregiver/family of the patient. My local hospice even has grief camps for kids and teenagers to bring them together to share their experiences. I know many families whose kids have found those times to be so helpful in coping as a family.

Also, for the op - I would suggest that you have a chart in mil's room where she can see it that lists who will care for her at certain times. Perhaps a small whiteboard and you can write out the schedule each morning if it changes from day to day. Let her know kindly that you love her and will be here at certain times and at other times, you must do other things so someone else will be caring for her. Write out and show her the instructions you are leaving for the other caregivers (even if they don't really need the instructions - think of this as a security blanket for mil - do it to help assure her that the caregiver knows what to do). And then, give her the dignity of choosing what to do. If she refuses to take pain medication from someone else, she will be in pain. That has to be her choice - and you should not feel guilty about that. You are giving her the dignity of making the choice and as long as you have provided a way for her to get what she needs, if she refuses, that is up to her. You cannot put your whole life on hold - so let go of that guilt. Do what you need to do. I can tell from your posts that you struggle with this and you care about her. You are not abandoning her to continue your life. You're not.

[clarkacademy]

I talked to my mother and she said my gramma had alot of this issue this is what she did with her.

 

Just up front there was no question about bathing, my mother had to be that person my gramma would not deal with another but for other things. If my mom had to leave or couldn't be available for whatever reason she would go to her room and say for example, I have to go to work now mom, Dacia will be hear for you if you need anything. She will help you with XYZ I have taught her exactly what to do so you have nothing to worry about. You will take your pills when she brings them to you and if you need help with anything you are to ask her because I will be at work, I love you mom and I will see you when I get home etc. etc.

 

Towards the end it was my mom who had control basically so my gramma would basically look to her and it sounds like your mil is feeling a bit of the same. Maybe assuring her and being firm could help you out too. She always made a point to let her know if she was going to be gone and whoever was there knew exactly what to do.