Seeking Opinions on Caregiving Situation

Take it from another caregiver for my husband as well as a daughter of a mom that cared for my dad . Your sister is being a selfish a$$. Her heart is not in the right place. She is not living the life of a caregiver and has NO right to make your mom feel guilty. It is constant no matter who is in your home helping. I have people coming and going a little too, but in the end it is all me. It is physically and mentally exhausting. I am 47, but as I age and lose my strength, I really do not know how I am going to do it. Please be an advocate for your mother. Your father already has many on his side.

If you want your sister to see both sides have her care for him 24/7 for a month and give your mom a break.

I don't know that this response is useful but I think your sister is pretty nervy to insist that mom continue to be the caregiver when your sister herself isn't willing to do it.

No, it's not fair to "force" your mom to continue to care for him. It's really not your sister's business. Sheesh.

Your sister's heart might be in the right place, but she is wrong to push her opinion on her mother. It's not her place, J.. What she may actually be doing is shortening your mother's lifespan.

Your sister doesn't get to call the shots. You don't have to convince her to see your mother's side. Your mother gets to make the decision. Help your mom find a place to take him. And then help her make it happen. You AND your sister can take your mom over to see your dad any time she likes. And then she can go home and REST.

Honest to goodness, I will never understand why people who don't have to do the caregiving have the nerve to demand that someone else does.

I have lived this and your sister is terribly misguided. My father had a heart attack in 2003. He was left with severe brain damage. My mother cared for him at home until he died in 2010. This entailed, lifting him in and out of bed/chairs, feeding him, dealing with his moods (sundowner symdrome), etc. In 2009 my grandmother, then 94, moved in with my mother. At the time she was fairly mobile. About 6 months ago the calcium in her blood increased and she was hospitalized and when she came home she was extremely weak, couldn't feed herself, etc. She is now 98. The doctor expected her to pass because the high calcium indicates cancer. Her status is unchanged. My mother regrets not taking her to a nursing home sooner so that she could adjust. Now my mom feels bad about sending to a nursing home because my grandmother could go at any minute - or she could hang on for years - who knows? The problem is that my mother has been providing 24 hour service for the past 10 years. Yes, she has a care giver come in a couple times a week, but can you understand that nearly every waking minute is devoted to my grandmother? My mother has sacrificed her life for a decade. She has been happy to do so, but I can tell that she is tired. (She is 73) She has lost touch with friends, her grand kids, etc. I applaud your mother for choosing to live and recognize that she can not continue with the care of your father. If your sister continues to not "get it" she should spend a week caring for your father. Please try to understand what a colossal task it is to care for an ill senior.

The time has come for him to be in a skilled nursing facility. They are not like they were 20 years ago. My MIL and aunt were in one close to my house. It was gorgeous. Your sister will think that you and Mom are the worse people in the world. I have been there. She needs to understand that Dad will be safe, cared for, fed and well cared for. Your Mom has the final say. Support her decision. Your Mom cannot keep this up without her health taking a beating.

There was a question a few weeks ago about a fiancée taking care of her soon to be MIL. There were a lot of good answers.

I will restate to carefully read what the people who DID the caretaking write. There is so much behind the scenes that you are not aware of until you do it.

I am/ was in the situation now. My father has vascular dementia with a myriad of health problems. My mother had been his primary care giver. They put on happy faces when we were around, and hid A LOT from us. We were so busy with our families we believed them. What was really going on? My mom was pushing herself physically to care for him, she was coordinating all his care, she was only feeding him...she was his nurse, driver, reality interpreter, physical therapist, nurse, OT, ST, cook, cleaning lady, diaper changer, walker, secretary... He was also verbally abusing her and physically intimidating her because of his illness. He was not a violent person before his illness..

She was 70. This is not how she wanted to spend her retirement. Life isn't fair, but she had the right to enjoy her life too.

Because my mom was doing this, she cut back on her own self-care and ignored a pain in her side. That pain was cancer. She came home 10-19-2013 and died 11-23-13. We all thought she was the healthy one.

My mom didn't have the strength or whatever to let us know she needed more help. Please listen to your mothers needs.

I agree with other posters. Unless you and your sister are going to take in your dad, you need support mom with HER decision.

Do you know your father's life expectancy? 24 hour care M-F runs about $800-900 a week. There is a fast turn for over for caregivers which would then put it back on your mom to care for him while you find someone new. What about weekends, holidays, Etc.

Assisted living starts at about $7000 a month

Does your dad have any VA benefits? That would make a VA home an option, and they are so much nicer than any assisted living.

I don't mean to be harsh, but please, please listen to your mother. The husband she knows is gone and having to face that everyday is so hard. Nobody chose for this to happen, and at this point you only have which OPTION is best. I'm sure your CHOICE would be to not have this happen at all :-(. So go with what option would give the best quality of life for your parents.

I know how hard this is. Please now you are not alone. Either way it will weigh heavy on your heart. Take care of yourself too!

EDIT: JC mentioned trusts. I agree! Help your parents set up advance care directives, trust, living trust and Power of Attorney. Make sure YOU understand what they want and how this will effect everyone.

To explain: My oldest sister is POA. She has never gotten along with myself or middle sister. Now that my mother has passed and my father is in long term care she no longer needs our help. She is refusing any contact with us regarding my fathers care, and forbids any of his caregivers from talking to us. She is living in his house with her boyfriend who physically threatened my father on Thanksgiving. He cannot get her or him out of the house or find out what they are up to. My father had a dr.'s appointment yesterday. I asked her how it went and she told me to stop harassing her? Really? I sense a future post coming about this. Sigh. Sorry to run on about this.

My point....make sure there are checks and balances.

Take your Mom on a week long vacation and leave your sister to move in a take care of your dad.

I had to care for my Mom before she died. Over a 5 year period my life got smaller and smaller. I lost most of my friends and even though it's 2 years since Mom died I am still a bit lost. I lost most of myself. I rarely dated, I couldn't just take a day trip or sometimes even meet someone for lunch. I had to make sure Mom was taken care of before I made plans. The last 8 months of Mom's life I couldn't leave the house, even to mow my lawn unless someone was in the house with her. My siblings both passed before my parents, my kids all work and have childen of their own so getting help was nearly impossible.

soooo.....

Take Mom on a vacation for a week and let sis take care of dad. Once she understands how difficult it is she will start looking for a place for him.

Your mom is in a really tough position and before your sister makes any further pronouncements about what should or shouldn't be done she needs to come to your mom's house and take complete care of your dad for a week.

My MIL has advanced-stage Parkinson's and had to enter a care facility this past September. She had a live-in boyfriend (long-term relationship). My husband and his sister and her boyfriend really struggled with what to do. It finally became too much for her boyfriend. One night she called us panicked and we went over to find her in a soaked bed with her boyfriend passed out cold in his room. It was scary. She's almost a quadriplegic at this point. People have no idea how hard it is to care for an adult who can do almost nothing for themselves. 24/7. And it's very tough to find good in-home caregivers, not to mention expensive.

My SIL tried to have her at her house and it was a disaster. My SIL was very against a nursing home prior to that. But even she has come to realize that MIL's level of care is so great that it's almost impossible for family to handle it.

And it's not just the physical care - it's the mental stress of being "on-call" 24/7! My MIL would stay up all night long calling for her boyfriend. Her anxiety got alot worse. She was very isolated in her condo because it was difficult to take her anywhere. She was always a very social person so this was terrible for her. My husband was having to take off work almost every week to run to some doctor or another. At the care facility all the professionals come to her.

Your poor mom needs compassion, not judgment. This is awful for your dad but it's awful for your mom too. My heart goes out to her and all of you.

Honestly, unless you or your sister are going to provide the 24/7 care that your father needs - it is not your decision to make. Your role is to support your Mother no matter what she decides and, if you feel up to it, ensure that your Father receives quality care at whatever facility he resides in...this means frequent, and sometimes unscheduled, visits, and time spent with him, dialogues with doctors, nurses, and caregivers.

This may be something that your Mother and Father discussed long ago when he was more sentient - that if his care needs exceeded your Mother's ability, that he be moved to a care facility.

Your Mother's shortness is a sign of care taker's fatigue, I will assume sorrow from watching her husband deteriorate, and most likely feeling trapped in a unending cycle of care taking. Fair? Eh, maybe not - but real? Yes.

I cared for my aging Grandmother (she lived with me) until I was forced to make a decision and move her to a care facility - hardest thing I have ever done in my life. My sister, from states away, demanded that I keep her with me. Reality was I could no longer provide the care that she needed - it took a fall, and a prolonged hospital stay, both of which should never have happened, for me to realize that I could no longer provide for her.

And, please, reevaluate your statement "Mom is making the decision based on her needs and not my fathers". Her needs matter and should be considered when determining the care needs and future of your Father. This is her life and her future also.

Hugs to you all.

I agree with the others in that unless you or your sister is willing to take this on, you have to trust that your mother knows her limits and can make this decision. Help her choose a place carefully, work out a schedule with your sister to visit your dad as often as you can, and hope for the best.

Your mom has kept him at home as long as possible. The end of her reserves is here. Putting him in a place where he can get the care he needs and she's not literally killing herself slowly trying to do this at home is supporting them both. Sorry that your sister doesn't agree, but to me, for her to not support your mom in this decision is her being selfish and childish and not wanted to accept that your parents are aging and they both need more help.

My grandmother lived with my mother and at the end of her life she was on Hospice but still in my mothers home. The last 10 days of her life were a nightmare for our family. She needed constant care, my mother would go to bed thinking "thank heaven I can rest" 20 minutes later my grandmother would be hollering for something or just hollering. Those 10 days honestly seemed like 3 months to me!!

If your mother believes that your father needs to be moved to a home, respect that she has wrestled with this in her head and has come to the best decision for everyone.

Good Luck.

M

I think your sister is out of line telling your mom what she needs to do. If your sister wants to keep Dad at home then she needs to pony up and go there every day to give your Mom a break. Yes your father worked hard his whole life to provide for his family however your mother worked very hard too. Probably even harder than working outside the house like your Dad did.

Help her select a long term care facility for him and all of you can visit frequently to make sure he's being well cared for. We've had a couple friends in the same situation and being at the home often keeps you in the loop on care and the staff gets to know and like you.

Please be on your Mom's side and help your sister understand that they are both old and it's too hard day in and day out.

This is your mom's call. If your sister does not want him in a home, she should step up and be the FT caregiver. As you know your dad's condition will continue to deteriorate. Your mom is telling you she can't do it anymore regardless of her reasons. She should not be judged for her decisions. I can't begin to imagine having to make the decision to put my husband in a home.

I hope your dad (and mom) have living wills. If not that is an urgent need that you could help them with.

Tough for your sister. If SHE wants to care for him 24 hours a day, make up the bed at the house and let her try it out for 2 weeks.

If she thinks she can handle it, let her move in there and let your mom stay at sisters home. Or bring your mom to your house and let her have a 2 week break..

FYI, My husbands grandmother had Parkinson's and she went down hill , but it lasted almost 5 YEARS! Sure she was beautifully cared for while kept at home, it cost them a fortune to have round the clock care in their home. Not to mention the thefts, the caregivers calling in sick or quitting. Then you are also as an employer you have to do the taxes for these employees, insurance coverage for having him cared at home. It is a constant traffic of people coming in and out of the house at all hours.. No privacy for your mom.

Grandmother would have been just fine in a facility, we would have been by her side all of the time. At least her husband, her daughters would have not felt so stressed about the care,

It took our whole family to keep this going. Then Grandfather was ill. He lived to be 102. He finally had to be put in 24 hour care, because this had gone on for so long, there was just no more money for in home care.

My MIL, their oldest daughter dealt with the care of her parents for 10 years! She was a nervous wreck. Once this was over her own health had gone down hill. My FIl retired during this time. They had planned on traveling, but all of that was put on hold for all of those years.

In my opinion if you and your sister can not/will not open your home to your father and his care givers then let your mom make this decision. She needs to put her own needs first as well. Her health is failing from taking care of him. You do not know what goes on at night. If your mom feels she can not take care of him properly then let her put him in a place where he will get the care he needs and your mom will be able to take care of herself. Only offer your opinion if she asks.

You said it in your own post. This is what you need to say to sister.

"However, neither my sister or myself can provide the level of care that he needs. "

Say "Sister, mom is an older woman now. She is only able to do so much. She has taken care of dad the best she can, she's an older woman herself now.

If you can't move in and help with dad and "I" can't move in and help with dad and mom doesn't want a full time caregiver moving in to care for dad then he has to go to a home.

Daddy's life is not going to get better. He's not able to live at home anymore. It's time to support mom. She didn't just decide to get rid of dad without keeping him at home as much as possible. She did her absolute best.

Let's go see her together and tell her we love her and know she's an exceptional woman, wife, mother, and friend."

It's so hard to make this decision. I'm sure she struggled with it for many hours before admitting to herself she can't do it anymore. That finality. She is surely wishing he could stay there, at home for much much longer.

I'd say if sister is still adamant that dad should be at home then perhaps having a Hospice caregiver or the nurse from the home health agency can visit with both you and sister and have that frank discussion about options.

I'm sorry your family is going through this. It's so hard to watch someone fade away. My ex MIL died from Alzheimer's. My mom had dementia. I also worked in home health so I've seen other families go through it too.

If your mom wants to put him in a home, and can afford to, it should be completely her decision. She should tell your sister that she's welcome to let him move in with her if she wants to care for him in her home.

Care giving, for someone who is in that condition, is VERY VERY hard.
Your Mom is not young.
And if she continues to care for your Dad... in his state, what if one day she gets hurt?
Or gets a heart attack just from the stress and lack of sleep????
Or falls, while trying to care of your dad and do things for him?
Those things, can and do, happen.

AND you and your sibling, cannot help, your Mom.
So it is not for you to choose and impose on her, what to do.
I did care giving for my Dad, for about 3 years. Why?
Because, my Mom, COULD NOT, do it... by.... her....self.
In fact, my Dad, WAS able to tell me, and my Husband that we need to help, my Mom.
And we were already doing so.
Which meant, taking OFF of work, and toggling everyone's schedule... so that, SOMEONE could be home with him, at ALL times.

Care giving, is VERY VERY hard.
And, it is 24/7, day and night.
And OFTEN times, the Care Giver, does not even get sleep themselves, NOR do they even have... "me" time or anything.
THEY cannot even, go to needed appointments themselves etc.
They have, no break. At all.
Care Givers, have NO life.
It is, VERY arduous.
I feel, that it is very selfish of your sibling, to make your Mom, do it all by herself.
AND you and your sister, CANNOT provide the level of care that your Dad needs. NOR can your Mom.

It took, THREE people, to do care giving for my Dad.
Everyday.
Day and night.
24/7 seven days a week.
Can your Mom... continue to do that all by herself????
And you and your sister feel she is thinking of "her needs and not my fathers"?
Do you know... that one day, while my Mom was home with my Dad... she fell. Onto the concrete patio. And broke her wrist and other things.
Who then, would have cared for HER while she was caring for my Dad.... while she was laying on the ground????
She was a caregiver. With no medical background or training.
Good thing, me and my Husband, were also around.
So now: think, how it is for your Mom and what you and your sibling expect, of her....
And that, your Mom does it all by herself.
She is NOT selfish or thinking of herself.

Do you realize... how HARD it is, to care for someone in advanced Parkinson's stages???????
You and your sister, probably could not even do it, yourselves.

Your Mom, has been very brave, thus far, doing this.
You need to see that.
And your sister too.

Do you understand, how Parkinson's is?
And how a layperson who is not medically trained, will also endure lots of hardship... emotionally and physically and mentally. Daily.
And, your Dad is probably bigger and heavier, than your Mom.
How can she... handle him, daily? Per toileting and bathing and all the basic things that needs to be done, daily, night and day?
Plus, how can she, get adequate sleep and care for herself, too?

Don't you want.... your Mom, to be able to care for herself too?
She cannot do so, at this point.
Your Dad, is in advanced stages of Parkinson's.
What if she and her health, starts to degenerate, too?
OF course, any Care Giver, gets "short" with other people.
Because, it is VERY VERY VERY VERY VERY, stressful, doing care giving.
And, it is a very lonely... thing to do.
Care Givers, do not have a social life, outside of their constant care giving.
And, they can never, leave home alone, the person they are caring for.
Your Mom, is a shut-in, Care Giver.
You NEED to, understand.... being in her, shoes.
As I said, it took THREE people, to do care giving for my Dad.
And he was, in a facility at one point, as well.
But even while he was in a facility, we STILL spent a lot of time, going to see him etc.
But at least at that point, medical professionals, were caring for him.

Your Mom, is all ALONE in this.
Doing, everything.
And to expect her to continue doing so.... because your Dad worked hard all his life to provide for your Mom, is NOT a reason... for her to be suffering, as well, as a Care Giver.
Unless you do it yourself or your sister, you will not truly understand, what Care Giving, is and all that it entails. 24/7, day and night.
And all the stress, involved.
Your Mom, is NOT... thinking of only herself.
She needs, help.
And lots of respite.

You said yourself, that "neither my sister or myself can provide the level of care that he needs."
So, how can your Mom, do so, and be expected, to do so? With your Dad who is in advanced stages of Parkinson's?

And sure, being a woman, with 'strangers' in the house, caring for your Dad... well, that can be, unnerving.
How can she defend herself, should something happen?

**ETA:
You AND your sister... NEED TO take care of your Mom, TOO.
Not be, bystanders.

Your Mom, needs care taking, too.

Let your sister, read all of these, responses. SHOW the responses to her.
And if she will not agree to have your Dad in an assisted living facility, then she better move in with your Mom, and help your Mom, herself.
And DO, something.

And just think: HOW... can your Mom, all by herself, even take your Dad... to his Doctor appointments???? How can a woman, who is probably smaller than her Husband, get... her Husband who has advanced Parkinson's... into... the car, and go to an appointment?
And HOW can she, even go, and run errands for daily living... while he is at home alone???
And that is just, some of the very few daily details, that your Mom, must contend, with.
As you said, your Dad "...has advanced Parkinson's. He is to the point where is often confused and has a very hard time communicating. Walking is a challenge and in the mornings he is often incontinent. He can no longer bathe or groom himself, or be left alone...."

If that were my Mom, I would be helping her.

Your Mom, probably already feels "guilty" for needing help.
That is a Care Giver's, life.
I know.
I lived it.

My Mom, was in her 60's, when we ALL went through this. And we ALL had to help, DAILY, with my Dad. And as he was degenerating further. AND when he had had a stroke and other things.
OF COURSE, your Mom, is mentally suffering.
This is, common sense.
NO spouse, can do all of that, by themselves.
A Wife, WILL suffer mentally and emotionally... from this. When their Spouse is falling apart.... physically and medically and emotionally.
That is common sense.
You both need to see.... this.
And realize, HOW your Mom, has been VERY BRAVE... all.... this.... time......

DO you want... your Mom... to degenerate, too?
You and your sister, need to, intrinsically.... think of her.

And, your Dad, will not get better.
It will get worse.
You all, need to realize that.
I know someone who's spouse had Parkinson's.
And her Husband, was a big burly sized man.
She could not, even assist him when he couldn't walk. Or when he couldn't control his reflexes. Or when he could not control anything he said or thought and was mentally confused.
You and your sister, have to get that, understood.

Your Mom, ALREADY... said... what she needs and cannot do.
So waiting for "if/when the time comes to help her find the right place for my Dad...." has arrived, already.
Your Mom, has already... said, she needs help. And with the decision.
And she is probably at her wits end.
Look after, your Mom, too.
She is in a very, hard place.
Emotionally.
And physically.
Your Mom, has already.... asked you and your Sister, for help.

If you both don't want your Dad in a facility, then one of you move in with your Mom, and do it and help, her.
So that, medical Aides can be there too.
And bear in mind, that having medical Aides in the house, does NOT mean, your Mom is thus living her life free and easy with no worries.
Because, it is heartbreaking, to go through this.
It is not perfunctory at all.

Have you or your sister... spent time... with your Mom in her home, ALSO caring for your Dad? Daily?
Have you seen with your own eyes, and felt it, what it feels like... to do so, with your own eyes and doing it, yourselves?
Why don't you both... go and visit your Mom, and stay awhile, and DO, what she... is doing. Daily. Night and day, FOR your Dad.

Listen to your mom and help her right away. She is saying that it is too much and it really is. You need to help her find a place to care for him as she is about to collapse from the work and stress. She can't do it any longer and I hope that you step up and help her place him.

As far as your sister, she does not see the situation as it is and will just have to accept your mother's decision. Do not wait for her to come around. Just state simply, "it is too much for mom and we are going to find help to care for dad".

I answered a simular question a week or so ago...

I cared for a family member for three weeks for 18 hours a day (including over nights) who is in her 80s and broke her leg. We were in a hospital setting and so at the push of a button I could have help in changing a diaper or diaper and soaked bed. I could not get her out of bed myself and by the time the aide came it was too late for the bedside potty. It really did take two of us to handle just the elimination care... one on each side of the bed as she was in pain when moved...and there was a lot involved...this happened several times a day. I would have been overwhelmed doing it by myself.

Then there was keeping all the medicines straight and which ones worked and which ones didn't and helping the nurses make good decisions on how to treat the pain and other issues because I had been there keeping notes on medicines and how she responded. (The one nurse that blew me off and did her own thing without telling me ended up causing her to stop breathing and a heart attack that put her in the ICU for seven days).

I was exhausted and foggy brained...and as I said before this was in the hospital with help...it got better in rehab and when she got home we were able to do it because the patient was healing and able to help us more. eventually she could do it on her own...but she was just injured and was healing and is now independent again.

I can't imagine giving the level of care required when she was in the hospital at home by myself for weeks on end, with no end in sight.

If she says she needs help and needs him in a facility then help her explore those options...they can range from 4K to 8K a month and drain savings pretty quickly...but she is screaming for help, and you do not see the behind the scenes stuff that she is handling on her own. Just restroom issues alone are overwhelming and can be a lot to stomach.

Tell her you support her 100%...and one option to look into are placement agencies that can find a home (a real residential house) that will take in people and provide the level of care for much less than a facility. Rotating nurses and care givers in a home environment for 2K to 4K a month. We had a great uncle in one of these...he was wheelchair bound...they got him up everyday, fed him, bathed him, dressed him, found him tv shows to watch, played dominoes with him in lucid moments, kept his medicine straight, and all the way to the end provided hospice care. We went by daily or every other day to check in and he was very content and had company with the other people who lived there. So look into this option as well as large facilities...a smaller in home facility might be a better fit and lake your sister feel better.

Good luck!! and big HUGS!!

Maybe your mother just hasn't found the right caregiver. My uncle had Parkinson's and in his last year was too much for my aunt to handle. It was the same situation, minus a lot of years, she was his second wife. Anyway, he was the one who made sure the lawn was mowed, the car was washed, there was gas in the car, and helped around the house. It was a challenge to keep him down. He would insist on getting out of bed. He would fall and she would have to call 911 to help pick him up. Well, they don't like that.

She placed him in a couple of homes and he hated it. He called me because he was paranoid she was cheating on him. He insisted she had a boyfriend (the caretaker) and called me because I was a good fair person. I explained she loved him, but couldn't do everything for him and had him there for his safety. True enough, I visited him at lunch time and the sandwich bread was dry and crusted, and the pasta was chewy. I fed him and later learned he could feed himself [smile]. He actually walked away from that house and got down the street before he was caught.

My aunt finally took him out of there, but she did need the break. She interviewed several caregivers, as you would a nanny. She found a big strong man who could pick him up and put him to bed. He was the most wonderful man. If I was there, he waited to the side and gave me my space. He came in every night and fed him, bathed him, put him in his pajamas and put him to bed.

When my uncle passed, the caregiver was there to set up our gathering and clean the mess.

Perhaps the two sisters can take the time to spend with mom to place an ad, make calls, and interview the caregivers until you find the right one. If you don't like the thought of him going into assisted living, I suggest you make the time to visit each option and help select the right one.

It is a lot of work and wear to place on one person. Your mother is realizing she can no longer handle this. Neither one of you should give her any grief. Join in as a family and help find the best solution for your father.

I take it the two of you are some distance away, where you are unable to come in and help on a regular basis. I have cared for my mother short term after her surgeries and it is not easy.

Best wishes.

unless your sister is willing to take in both your dad and your mom, and take over primary care taking, she has no business dictating. 24/7 care for a loved one who is both mentally deteriorating AND incapable of basic hygiene is an incredibly demanding and draining task. i think your mom is a hero for doing it for so long, and you are right to be concerned about her health.
this could break her, and then your sister will be faced with adamantly insisting that BOTH of them be cared for at home. is she willing to do that?
there are awful care facilities, and there are brilliant ones. and the best ones are the ones that are close to you where you and your family are there all the time and your dad will never be abandoned to potentially abusive workers.
your mom is the one who needs to be supported right now. your sister needs to get on board.
khairete
S.

When faced with such a difficult situation, it may help to realize that all needs are legitimate (whereas wishes and hopes may be frivolous), and needs are often in conflict with each other. That's tough, because not all needs, no matter how valid, can be met.

I've had to weigh and balance my own needs with my mother's over the past few weeks since she had a mild stroke. She now needs help with almost everything, hours every day, and since I'm the daughter that lives next door, much of it is falling on my shoulders. And I'm cooked, drained, spent, and feeling rather desperate (both of us being hit with a stomach bug last week didn't help any).

Yes, my mother cared for me as well as she was able when I was little. Yes, she deserves good care now. And I've been realizing that with some pretty serious health and sleep problems of my own, I'm neglecting my own needs. You know how flight stewards always instruct the caring adult to put on the face mask first in an emergency? I'm learning the hard way that if I don't get a chance to take care of myself, I'm going to burn out in short order. I'm feeling awfully close now.

That would NOT be helpful to my mom. But we're just beginning to cast about for attractive options. I suspect we'll be looking into long-term care for her soon. If we can't afford a nice place, she may end up in a less-nice place. Life is filled with tough choices, and this is one of the hardest I've ever had to face.

I'd tell my sister, "Please don't assume your mother 'should' be able to do that non-stop caregiving until you have tried it yourself." You just can't know the repetitive, mind-numbing, heavy, and often dirty work involved.

I would talk to them and say that you understand her concerns and x and y are yours. Is there a middle ground? Would she want to be part of the interview process and would that help her feel better with his care? Would they move to a senior living neighborhood where they can get help when they need it, but it wouldn't be assisted living per se?

My grandmother is a retired geriatric nurse. She cared for her husband for years when he got Alzheimer's and declined. THe family helped, and twice a week a nurse came to help her. But the day came when she had a heart attack and he HAD to be moved. If you discuss this now, then you can look at options vs be forced into something quickly in an emergency.

At the very least, your mom needs respite care and support. Being a caregiver is hard and I saw my tough as nails grandmother crack and cry when she had a tough day. In the end, being in the nursing home was best for both of them. Grandma was able to see him daily, as he was not far, but she could go home and not worry about him.

I think, as you stated, that only your M. knows how much longer she can care for her husband properly.

Your sister is most likely feeling guilty that she CAN'T be the one taking care of her, but it is unfair for her to guilt M. into keeping him home if she can no longer care for him properly.

One thing to think about... many GOOD care facilities have waiting lists... you may want to really start looking for one, and get on the waiting list, or understand that if you wait until the last minute, you may not be able to get him in one that is what you are really wanting.

Your M. may also want someone else to help her make the decision... so maybe you need to just tell her that you will help her research a good place for him to be cared for properly.

A member of my Sunday School class at church just had to make the decision to put her husband in a care facility due to his increasingly debilitating Parkinson's disease...... (I'm 56... she is near my age, and I'm assuming her husband is also around my age, or a bit older.) I'm sure that was a difficult decision to make.

I would start researching long term care facilities in the area and visit some of them to find out which ones would meet the needs of your father and allow your mother (and you and your sister) to visit often. Check into costs of the facilities and the insurance benefits that might be available. Then present best options to your mother. One person (even one person with infrequent help) can not adequately provide 24 hour nursing care to a person. (that is why nursing homes have a fresh team come in at least every 12 hours) Your sister has no right to voice objection to this plan unless she is willing to become a major caregiver for your father. Perhaps she could spend a long weekend with him and you take your mother for a respite break. After she does that, she will be able to understand the decision. Your mother can go visit him daily and then be able to get some needed rest without being on call 24/7. good luck!

Being a caregiver--responsible for the 24-hour care of another human being, not to mention an adult--is a very stressful situation and unique to the relationship between the two people involved. Your mother absolutely needs to do what feels like the right thing for her own sanity, and that won't always look like the right thing to outsiders like you and your sister.

Encourage her to seek caregiver support--a group, a counselor.

When my father was terminally ill, my mother needed breaks that other people didn't understand. In the midst of tending to his needs, she also needed to come to terms with what this would mean for her life. She couldn't wait until he was gone to address certain concerns. She needed to prepare herself on multiple levels to be without him. No one could have told her what that should have looked like. His brother was angry with her for not letting him die in the house that they'd recently built and shared. She had to consider her future and didn't want to come home to that memory every day. Upon her decision to sell the house, she would have had to disclose that somebody'd died in it.

I was 24-hour caregiver to a close relative, and there were moments when I wanted to be short with her. I think that I was twice. I was so thankful for the caregiver support that I received. That is why this system of support exists. Caregiving for strangers is not nearly the same. There are no relational ties to influence the interaction.

Try to help your sister to understand that there are things that happen between a husband and a wife that the children will never know about, things that drive the rest of their relationship or show up to influence at the least. They are human beings and have limitations. Adults who are used to being independent and even caring for others can become resentful of their new circumstances and mean to those who love them, especially the ones closest to them. A caregiver can only take so much of this, even knowing the source.

Your sister's sentiment is precious, but she can't possibly see the full picture and needs to understand that--especially if she is in no position to take over--there are some aspects to this that will not make sense to her. Just like if you needed to divorce your husband or send him to rehab or something that would separate you two, your children wouldn't necessarily know all the details that would go into that decision. They might even hate you for making daddy go away against his will.

I'm sorry that you're having to go through this, watching your father wither away. It's hard. Best of luck to you. It's not as cut and dried as we would like.

J.

I'm sorry. This has got to be tough. I know how hard it was for the 6 days before my mom died in September. We gave her round-the-clock care and it's NOT an easy feat.

My parents, before my mom died, took care of my dad's mom - she's 96. She's not dying any time soon...we've determined that Heaven doesn't want her and Hell can't handle her. So she's left here on earth. While my grandmother can get around with a walker and oxygen 24 hours a day. My parents were in their mid-70's and it was HARD WORK - hospice was just stopped for her in November - the doctor's realized she's not dying anytime soon either....so no hospice for her. Caring for a family member is not just about providing a roof over the head, food in the belly and clothes on the back...bathing - is NOT easy - this is not a 12 lb baby that you can stick in a sink - this is a large human being that needs a tad bit more respect than an infant...I know my dad is NOT prepared to bathe his mother. She's not there - but when she was recovering from surgery - that was my mom's "job" to bathe her - it's NOT easy. Maybe putting your sister in that situation for 2 weeks - will help her see that she's being unreasonable in her thinking. While it's noble and wonderful - being a caregiver is a FULL TIME JOB!!! And it hurts...not only to see your loved one deteriorate but the lifting, if you don't do it right - you can hurt yourself as well.

Your mom knows what she can and cannot handle. The final say should be hers. And hers alone. If your sister feels that he should be home - then she can move in and care for him. Then she will find it's not as easy as she thinks. If she loves your parents? She will respect your mom's wishes and help her find a living facility that WILL be able to provide for your dad 24 hours a day.

I honestly believe that the only way your sister will see if she cares for your dad for at least 2 weeks - full time - and send your mom on a spa vacation. Then she will see that your mom is NOT some spring chicken any more and can't do it alone.

on a better note - how's your son adjusting to life here in DC?! Does he like Columbia?

These are NEVER easy situations or decisions. I do agree with Becca. If the options are your Mom caring for him; care in your Mom's home; or a out of the home option - it's your Mom's decision vs. you are your sisters. Of course you will have your opinins and advice, but your Mom is the one caring for and living with him - no one can make the decision but her. Maybe she can try someone in the home (less than 24-7 at first) to see what it's like. Or start to visit some facilities to see how it "feels". Ultimately, support your Mom. Best of luck.

Put him in long term care now. He needs the care.

We did not with Grandpa and he ended up dead from something stupid in his house.

Please keep him safe. Long-term care is a good option. There is no reason to feel it's not ideal. And caring for someone like that is a huge stress...not good for anybody.

It's because you care, that you seek a place for him to stay long-term.

RevRuby is sooooooo on the money.

Do that.

It's actually what got both my uncles on board (finally!) in getting my grandmother into long term care (at a WONDERFUL facility -Crista, if you have anything like that near you).

One couldn't even do a single day (Well Rick, unless you're willing to take her on at least half-time, you don't get a vote), the other lasted until Wednesday before he realized there was no alternative.

_____

Some long term care facilities are nightmares, most are necessary evils, some are amazing.

My grandmother's was amazing... But cost $9,000 a month to start, and only went up as the years went by. Many, many, many of the patients were scholarshipped or backed by charity, some had long term care insurance, and some (like us) were self pay. Really, our payments were paying for 3 other beds each month. So even if a place looks too expensive to be possible DO look into insurance, scholarship type options, & charity. Because, from first hand experience, the best places are NOT only for those who can afford them. But it takes work.

Why can't you and your sister help more?

There were 3 sisters caring for my dad. I did the most, then my oldest sister. The middle sister was always too busy with church, her masters degree in theology, and just selfishness. However, when we split the inheritance she was not too busy to meet at the bank.

I think that you are thinking in the right direction. If your sister is not willing to roll up her sleeves and be a major help in taking care of your Dad, then it is simply not her place to guilt your mother into anything.

I feel for you. We love our parents so much. You are torn because your mom is suffering herself and is probably feeling like she is at her breaking point. Which I understand. It is a huge job being a caregiver. Not everyone can do it. And nursing home or assisted living homes are not always very good to people. I think you are right to support your mom and her decision. I get where your sister is coming from also. She is emotional and only seeing one side. But no one knows what its like to be living this everyday other than your mom. be supportive and love your dad. If she decides on a facility help her find one. Research it all that you can and make sure you all are there a good amount of time to see any miss treatment. Those places are very dangerous in no one ever listens to the elderly or sick. Which drives me nuts. Good luck. And I am so sorry you have to go through this.

It's unfair to both your father and mother not to take care of them properly. Your sister is caring, but misguided. As long as you and your sister and any other siblings are active and present in whichever long term care facility (that you carefully choose based on excellent reputation) they go to, and you visit them frequently they should be well taken care of. Each of you should be visiting them a few times a week or more. If family can be there daily that would be ideal. Get to know the staff. Bring your parents food from home when you can. See if any of the local facilities have any of their friends when you tour the places. Make your parents part of the decision making process as much as possible. They need to be as close to home as possible.

But I agree that your sister is probably going to need to live it herself before she realizes how misguided she is. She's going to have to feel how physically impossible it is for someone in good, physical health that's young to do it and how quickly it breaks the body down to care for just one grown adult, let alone two. She's going to have to feel the emotional and mental misery that will build up in a short period of time... and how quickly her social life will disappear. How her life won't have time for anything else at all. Her life will center around bathing, toileting, getting her father to eat even three bites of something nutritious and not just ice cream... around not being able to sleep because night time doesn't mean sleeping for him, but difficulty sleeping and a high likelihood of falling out of bed and breaking fragile bones. And how he can't be strapped into bed because it's illegal, and only one side of the bed can have a railing, if at all, because of disability laws. She's going to need to have a home safety assessment done to see what home modifications need to be made for both parents. She's going to have to make sure that both of their doctor appointments can be made, and that their rides are disability accessible. On a weekly or more basis. She's going to need to sit in on those doctor appointments to see about nutritional changes and listen to the nitty gritty truth about their health and their needs, especially regarding their safety and their care. She's going to have to realize exactly what 24-hour round the clock supervision and care actually mean.

She's going to need to listen to your mother, and not the idealized vision your sister has from 25 years ago when both of your parents probably said, "I never want to be in a facility. I want to die in dignity in my own bed." Well... visions change when reality happens. Visions change as situations change, and as your parents understand what dignified end of life care means.

This is a difficult situation. We went through this with my mom. My father took beautiful care of my mother. It was an act of love from my dad to my mom. I was blessed to witness that. However, it became very obvious that it was having an affect on my dad, which is not uncommon. After 5 years, my dad decided to put my mother in a secure, locked down facility for dementia patients. My mom has frontal temperal dementia and Alzheimers. She has been in the facility for 3 1/2 years. She doesn't know anyone, can't walk, can't use her hands and her arm movement is going as well. She cannot talk but grunts.

My brother and I will NEVER question what my dad does in regards to my mom because we know he has her best interest at heart and he knows what he can and cannot do physically. My mom does receive hospice care as well as individual nursing that my dad pays to come in and keep my mom company during the day for a couple of hours.

While I'm sure your sister has the best of intentions, what she is doing is wrong. Most care givers work themselves into an early grave. Your mom needs your support. She needs your permission to try and live a more balanced life. Your mom's health and mental stability are now going to suffer. Please support her in whatever decision she makes. She walks the walk every day.

Caregiving is a difficult job when both are mentally and physically able bodied. Your mom's mental and physical health are also of a great concern. Mom being short tempered is normal and it is part of the caregiving situation. Try to get her to take more breaks from caregiving and go to the spa or hairdresser to recharge her batteries. She must continue be her in the middle of what she is doing. Only she knows how much she can handle and it may be that she is at the end of what she can do.

Your sister does not see all the daily details of what it takes to care for a person and perhaps she should spend some time doing this so that she knows why mom feels the way she does.

If you and mom can find a nice place for dad it may be time to consider this before it is too late and there are not the choices that she wants to make for her mate. Will dad be able to go to a place nearby and mom can see him daily? Will the budget be affordable to provide for the home? Will mom recant and let "strangers" come into the home to care for your dad at night? Mom has to feel safe in her home.

It is a tough answer but sit down and write the pros and cons and come up with a plan. My heart goes out for all of you. I am still in the caregiving process with hubby even though he is mentally and physically able to do things. I never know when things will turn and he will become very ill.

Have a great year next year!

the other S.

PS My mother in law will be 94 in February if all goes well and she lives alone in her little apartment and is happy.