I often thought if I only could get a little help, I could rest a bit, and it would have made it easier. Unfortunately we live in a society that expects mostly women to take on this burden often with little or no help if there is no extended family around to help out. I hope this improves in the future and that you get the help you need right now.

Yes, it is the women that bear the burden most times. I had a thoughtful BIL that helped a lot with my dad. He is the other that passed.

I'm sorry for your losses and for what you are going through. Been there. Get some help. Catholic charities can at least spell you at times. Insurance should pick up some home care.

Enlist the next generation, assuming they're old enough. Even if for an hour or two a week so you can get out or just rest easy.

And always know, we're here for you.

We are a small family, yet we are good together.

Close family helps so much. I know it can be hard sometimes to agree on everything, but it is so much better than being alone.

took care of my daughter for 45 years but what many do not know is that I was not able to take care of my mother who had Alzheimer's. I could not take it emotionally. Instead I visited her often in one of our local nursing homes.

Hopefully there is some one who can help the two of you in supportive ways. That can give you the minutes you need to regroup and start again. Even if it means that you just take a nap.

Bless you.

Alzheimer, hardest disease ever to deal with. None are easy, yet watching them fade away from you is so very painful. I understand.

No, I did not know you took care of your daughter for so many years. For you love and strength .

When we talked about your daughter the other day, I had no idea. I was thinking this was recent and your daughter was little. I'm so sorry I put you through that.

recent.

I had no idea. Truly and I hope obviously.

for someone with advanced Alzheimers is a challenge few could manage well.

I would never ask my kids to do that for me. I know they love me and I love them. They shouldn't have to give up their lives to watch me slowly deteriorate.

diseases we can get and it often requires special care. When I took care of my daughter it was the same problems every day. When my mother came to live with us she was up to something different every day. I could not keep up with her.

Caregivers are a special group of people - one of the things I still do a lot of lobbying for is to get our government to treat them as workers regardless of the relationship to the patient.

They can wander out the door when you're sleeping, etc., as you know. So, in a lot of cases it is much better for them to be in nursing care.

caregiver. It is a very hard job, I read a book "36 Hours a Day", kinda says the big picture. We had my father, I had my mother-in-law and then my mother. My sister did most of the caregiving but my brother helped lots also, I was about 300 miles away but visited and contributed. There are some tough decisions which has to be made, my heart goes out to you, there has to be a special place for caregivers, it is well deserved.

We were all together one night for my dad. My sister got angry with me, she told me she was doing everything herself, no support. I wasn't helping her enough. Yes, we yelled at each other. I asked her what the hell she wanted me to do, quit my job to help her more? She was married with two incomes. Worked part time. Me, single living hand to mouth giving 30 hours of care and working full time. Yet she was so angry with me. I walked out that night. I could not deal with it. We went through our ups and downs.

When we made the decision (I already had) to place my dad in a nursing home it was four making the decision, my mom, my sister, my brother and I, hard but we supported each other at this time.

With my dad, he was my father, my daddy and as an adult my friend, I had to change all of this to he was in need of care and now I was in a position to tell him what to do, it was difficult. We know we got good care for him, he had lots of visitors in the nursing home and they knew someone would be in every day checking on his care. He lost the ability to walk, he could still talk though some things was not in the proper years but as I look back I was happy to still be able to talk with him.

A caregiver has a very stressful life, for both you and your sister, I wish for strength for you and your family. I don't know how I would have done without my family.

a little over a year ago. It is rough, even if you are ready for it and are expecting them not to make it.

I worked 40+ hours a week and had to hire a caregiver during the day, I did everything else. The best advice I can give is to get family to spell you occasionally for a day off on the weekends. Caregiving for a parent is really tough, my mom passed almost 3 years ago on my birthday after 2 and a half years me taking care of her after a series of small strokes and I am just not the same person I was.

If you can get family, friends, local community or gov't/Medicare help, hired help -- whatever you can to take the burden off of yourself while keeping Mom cared for while also having some time for yourself.

I'm so sorry. My Mom is 88.

I went through it from 2009-2014 with 4 close relatives. The stress and exhaustion does add up. You need to find some moments for yourself. It is so imperative to your overall health.

So very sorry to hear about your mom. You've been through so much pain in such a short amount of time. I wish you strength, courage and comfort and lots and lots of love and hugs.

We would alternate between staying with her during the week.

It was a privilege to do it and I would do it again. But it gook a lot out of me and my mother.

I also took care of a friend for 6 months while he was dying of brain cancer.

Again it was a privilege and I learned how precious life is.

I will be praying for you and your mother. I hope you remember it is important to take care of yourself. of course that is hard to know how to think of yourself in these situations.

Whatever happens you we be by your mother's side because of your great love for her and you will see her through this last stage of her life and you do it in complete love.

Yup, we alternate here. Nieces and nephews lend a hand. I could not be closer to them had they been my own. Me, I am alone, divorced, not unhappy with that yet it is hard at times.

We are the caregivers that walk them safely away. I know your faith, I love you for it. I lost mine long ago and will not ever get it back.

Thank you for your prayers, my mom will appreciate that. She believes.

You sound so weary, understandably.

I spent two years constantly flying back and forth between PA and FLA. My mom was in the late stages of Parkinson's. It's such a battle, trying to care for her there and my husband and son here. We have no time to take care of ourselves.

I wish you some peace, sheshe.

Some states provide Medicaid assistance that can be used to keep people out of a nursing home.

If your mother has too much in assets, consider spending it on getting assistance. You need it.

I know how hard this is.

Thanks. Yes, we will have assistance, my sister sadly has become an expert at this. She is a nurse as well. She knows the system.

She has done all the paperwork on the last two. She got all the aid, then she closed out their lives when they died. Who the hell knew there was so many things that had to be finalized.

It's so hard even under the best of conditions.

My siblings and I are a pretty good team, helping our mother in the last stage of her life. I don't know how only children manage!

Last edited Mon Apr 13, 2015, 10:34 AM - Edit history (1)

It was five years for me, taking care of my sister. Right up front I would say to get as many extra services as you can. Hospice and paliative care can help with some of the home health aspects. Look for things that she may be eligible for cost free or sliding scale. People always tried to spook me about taking care of myself but I was pretty consistent about keeping my yoga classes and designated relaxation time scheduled. I suggest that you carve out self care time, be it exercise, meditation or yoga, or whatever suits you and save that time for just you! If people offer to help,say yes. Get a calendar and make it happen! Life is too short. Caregiving is one of life's gifts. We get back more than we give, but we have to put ourselves first throughout the process. My best to you! Peace and love, Kim

Strength and positive vibes to you.

Oh I wish you strength! Our mom's are the same age! I understand but I'm not at the same point, so I really don't understand yet. Thank you for sharing.

thank God for people who work as caregivers like her. It is such a taxing job looks like we are able to give sheshe a little strength back

you have already been through and what you are about to deal with. My heart is with you and your family.

Hugs.

The emotional toil is often harder than the physical challenge.

My dad passed 4 years and 3 months after his paralyzing stroke. When he wasn't in the hospital or the nursing home, I was his caregiver. Eleven years after his passing, I am still worn out. Please find a good support system. Find ways to laugh and smile.

dont wait until you are worn out to take a little care of yourself. do it from the start. carve out a few hours a week that are just for you, and line up whatever you have to line up to do it.
put that marker down that you need help. that you deserve help. do it before the stress sets in and it is one more impossible task.

we love you she. be good to yourself. you deserve it.

and how tiring it is but you know what? There is not a day that has gone by when I wouldnt do it all over again to have her back.
But big hugs /hug

What everyone else said.

❤

I found a lot of support from friends here two years ago, and before that, as my parents needed more and more care and then eventually passed one after the other.

Please don't hesitate contacting me for advice or just a shoulder.

For you loses,

For you strength and humor throughout your ordeal. Dayun, you are a good person.

Thank you, if I need that shoulder I will let you know. I thank you for the offer.

I had my Mom living with us for the past 5 years. We were lucky in that her mind was excellent but the body not so great (bad osteoporosis and macular degeneration). It was 5 years of meals, showers, rolling up her hair, laundry, doctors and helping her out...there were many fine parties and dinners out...she loved the family history and buying stuff on QVC! Then on January 20th, while we were at work that day, she fell in the house and laid on the floor until my partner found her at 6PM...she went down hill right away and passed in 2 days...one week shy of her 94th birthday party.

Our hearts are still broken and we miss her so much.

I wish you strength...Caregiving IS one of the hardest things that people can do.

We were lucky in one thing, the nursing home gave us the heads up about our dad. I talked to my sister several times on Friday and Saturday before he died. I was working that weekend. I asked my sister if she thought he would be okay til Monday, my day off. She said, I don't know.I left work that Saturday early. I sat with him for 4 hours, just us. The rest of the family made it there later. I am forever grateful I did, he died a few hours later.

But it's a huge burden for two to carry. Can the nieces, nephews and grands help?

Good vibes to you++++++++++.

You have a beautiful heart and soul.

Mahalo, she~

Do take care of yourself -- treat yourself when you can.

Hopefully checking in her can provide a wee bit of (virtual) sustenance when you need it...

Dad passed at 85 January 2013. Mom is 87 and needs much help. I'm an only child.

You will endure but the world won't ever be the same without parents. It will seem lonely.

All four of our parents are gone now. Husband's and mine. Three of them had a long, slow, sad, and miserable decline. We had to get help, too, and dealt with all kinds of stress. Fatigue, insomnia, constant nagging worry. You have my sympathies, my friend. This is no fun. Watching our elders become physically overwhelmed and then taken away.

Sending you love and vibes of calm and inner peace.

so easy to do these days.

I am so sorry for all your losses. So very hard, for us all. Two of the wee ones are in counseling. They are scared. The little girl. My great niece, she is afraid she will die of cancer.

Love you calimary.

What I found myself saying soooooo often was - "it's just one of those things." Not to minimize it in ANY way, mind you. It's just one of those things. Just one of those rites of passage we all have to go through - nursing our loved ones through it before we have to go through it ourselves, I suppose. It's just one of those things - that we poor feeble, fallible, all-too-human humans have to deal with on this physical level.

The human body fails. It just does. It grows old and infirm and it fails. Both my kids witnessed that in the long slow painful decline of two grandmothers and one grandfather. My husband's dad also was diagnosed with a long slow killer disease (a Lou Gehrig-type nervous system thing whose name was long and Latin and had about 16 syllables in it). He was able-bodied and able-minded til the end, when he suddenly took a turn for the worse because he couldn't swallow anymore, was hospitalized, and a week later he was gone. I figured it might be a reward from Overhead because he'd been such a kind man and led such an exemplary life. VERY happy to say he had NONE of the suffering the other three endured - which was PROFOUND, and rather heart-breaking. I wish they'd all had an easy, peaceful, relatively swift end the way he did. They didn't deserve this suffering. And my kids were there for it all. Btw - I was amazed that - at both my in-laws' funerals, the other kids weren't there. I dragged mine out of school to go stand with their grandma when their Apa died. Just seemed like that was how it was supposed to be. Where were the other nieces and nephews? Oh, off snowboarding, we were told. Oh, off with their friends. Oh, football practice dontchaknow. Oh, shit.

Just one of those things, I suppose. Human foibles and failings and all that. Not much we humble mortals can do about this stuff, except to try to endure and interpret and try to gain some wisdom and perspective that helps us, at least, to make sense of it.

Sheshe2, I will keep you in my thoughts and meditations... I know your challenge and I send you hugs and good energy. My mother is the same age but I am glad that there are others caring for her and that she is still in good shape for her age, but there have been others where that was not the case and I was one of too few caregivers.

in sending cyber (((hugs))) and real time prayers. I was a caregiver to my father until my grand mal seizures returned. Luckily, a neighbor runs a care facility at her home and has only 3 residents so he has good care. I can understand your comments about your father.

Thank you. Four hours in the ER Thursday.

Yep. Tired and it is 4:30 in the morning now.

"I am so very tired."

Is your sister younger or older than you?
Does she have a lot of stamina?

Will answer there.

My mother turned 93 on 4/10 ...the last 4 years, mini strokes, falls, etc.
Assisted living, nearly into hospice, rehab, another assisted living place...but not reacting well.
Dr. put her into hospice on our 4/9 visit. She will stay in the lovely place she just got to.
I feed her when I'm there, but they feed her the other times. Sleeping a lot.

I often ask, "when does this end"? but there are no answers. Just the ups and downs of the
process...

I've been reading on signs of death...and learned that there is a first sequence followed by the sequence of possible
things that indicate that death is imminent. But the indicators overlap...and you are left with "Who knows??"

It's a darned upsetting thing to see...and in the last few days, Ive lost weight, am back to being up at 2 AM instead of in bed, etc. etc.

My "core family" has been ruined by the religious nutty stuff and narcissism, so no help there.

You just plod on, what else can you do?

My dad was in hospice and my BIL for a few days before they died.

My mom is not close to that yet......

I know you'll be cherishing your mom...

Had 2 hour meeting with the hospice people this morning...was exhausting.

It becomes almost surreal....

...even harder when it's someone you love. Remember to take as much time as you can for yourself. I do know you'll never regret making this choice. Best of luck, and my sympathies to you and your family.

That means a lot.

Take care of yourself.

not an easy job. We were far away from my in-laws and hired aides to come in. There's so much that they need help with - driving to appts, organizing the meds, daily chores, etc. If she is moving in with you be sure to forward the mail and take over the bill-paying. We found my FIL had over & under paid several accounts & had to sort it all out. Lots and lots of details. Make sure to make time for you along this journey.

for occasionally thinking what a pain in the ass my brother is.

So much energy goes into one member of the family.

My other brother has lots of problems, but the state takes care of him.

just hang in there

take care of yourself
you have to

and when some well meaning clown tell you the god never gives you more than
you can handle, you have my permission to hit them with a brick.

Get some respite help--schedule it if you have to. And pamper yourself. Eat right, keep things simple. Stuff doesn't have to be perfect; "good enough" is great--what matters is to maximize the quality of your time together.

Really just waiting word if the surgeries are a go right now. At 89, will she even make it?

Best wishes to you and yours. You are in my thoughts.

Peace~

What's a real sanity saver is that hospitals these days have wifi--at least you can fart around on the 'net while waiting. The waiting is always the hardest part, as the song says...! Hang in there...

Yes, there is always that MADem. Is that where you compose your epic take downs? Gotta say, I am in awe.

Hang in there too.

Ya know maybe some day we will meet.

I feel for you Sheshe. Hang in there. Hope you manage to get lots of help and support.

I took care of my mother who was bedridden by chemo and wanted to die in her home. It took two years. It nearly killed me and I still haven't unraveled all the guilt and grief. But I'm glad I was there. I was with her when she took her last breath. It wasn't peaceful but the pain was over.

The only things I learned was to get as much help as you can and that hospice was the best help and support I could ever have asked for. My mother was afraid to sign onto it, so only consented for the last few months. But it was the best decision for all of us. It opened up so many services and truly helpful, compassionate nurses and doctors. I tell everyone that hospice does not necessarily mean you will die right away as some people live for years after their terminal diagnosis. But if all treatment options have been exhausted, it is truly the absolute best decision for the patient and for the caregivers.

I hope this isn't too hard on you and takes too much out of you. Come and vent and ask for help from whomever you can. My best wishes to you.

It takes a special person to be a caregiver.

I am okay, just overwhelmed. It is just to soon after all the rest.

Love you~

Others have said it… I agree… This is why we need a health care system that supports the kind of care you need in the comfort of a home.

I took care of my mom weeks before she was forced to spend her remaining days in a hospital setting. I wished that I could have gotten my other siblings to assist in this caregiving. Mom would have crossed from this world more peacefully. One person cannot be an island.

We need this more than ever now.

Strength and support to you from others is my wish, meanwhile

I'm so sorry to read what you've been going through. My thoughts and virtual hugs are directed to you.

I know you've had it rough.

Thanks

am facing my husband needing care. I too am shit tired exhausted. Take care as best you can. I get it. I really do.

You take some care of you.

I know the feeling well.

Don

I just wanted to say I respect you for stepping up and being there for your loved ones. A lot of people aren't fortunate enough to have someone like you in their lives.

I hope you are able to find the moments with your mom that make this hard part worthwhile. Peace!

we who love. I would have felt so alone on that path, were it not for the understanding that it is heavily trodden.

of having Type I DM for 50 years. He was diagnosed when he was 4. I kept him home for 3 years after he showed signs of vascular dementia, but then the dementia made it too dangerous for him to be alone during the day. I had to work full time to keep the health insurance & prescription benefits. Those were a tough, stressful, but very rewarding 3 years, and I was heartbroken to put him in a nursing home. I lost him last year, but at least we were able to celebrate our 30th wedding anniversary. I miss him. You are in my thoughts.

Mom passed in June 2012 then I cared for an abusive friend. It does you in. Completely. Good to you, be well and make time for yourself. Get out and dance your ass of every once in a while.

My mother, 86, just went into a nursing home two weeks ago. Her dementia took a sudden and very deep decline. She is in complete agony every waking minute, reliving every anxiety she ever had in her 86 years over and over as if it was happening right now. She has zero happy moments. Zero. She sleeps much of the time. She also has multiple physical disabilities and just broke her shoulder falling out of bed on top of many other sad things. I can deal with losing her; since she is 86 I have had many years to prepare. What is exhausting is constantly trying to soothe her anxieties. On top of her constantly and only thinking of worries from the past, she has added a fear that the people in the nursing home are out to kill or hurt her. I just spent four days there from 8am-8pm, both weekday and weekend, and worked with most of the staff that work with her. They are not only kind, pleasant, helpful, they are extraordinarily so, every one of them.

What makes it worse is that Dad, 83, also has some dementia but not enough for the doctor to make a formal diagnosis as yet. We all see it, but the doc doesn't because Dad passed a memory test. When Dad is cogent enough to understand what is happening with Mom, seeing his quiet anguish is enough to tear my heart out. He still calls her his bride; they've been married 60 years, and that is how he introduces her. Most of the time he doesn't comprehend her situation though, and he tries arguing logic with her, and that is hopeless. He goes to the nursing home from 8am to 8pm and wanted to sleep in the chair next to her and is angry they won't let him. He doesn't understand she is never coming home again. She asks to 'go home' for a total time of at least 4 hours a day, sometimes begging and pleading for 30 minutes non-stop. But the 'home' she wants to go to is her home in 1967, or 1957, or 1987. (Their residence as of last year became my sister's house, and Mom couldn't adjust to that, nor the hideous way my sister kidnapped them and sold all their stuff out from under them, and that's when Mom began to go south, and after 6 months, really bad, and finally, within a year, just snapped.) Dad makes it much harder on the staff at the nursing home. Mom will ask for a bedpan every 45 minutes....only because since she just woke up, she thinks she needs to go. And Dad will keep asking them to put her on a bed pan, every 45 minutes, when Mom doesn't need to go at all. He takes her in and out of the front and back doors, sometimes in and out every five minutes, and that sets off a building-wide alarm that some nurse has to go run and shut off (he takes her onto little porches there). But the staff understands and treats my father well, too. Since Dad is getting zero mental stimulation, just staring at the walls or off the porches all day long, he has tanked quite a bit in just the past two weeks.

My parents are no longer two people, they are each half of one. He inhales, she exhales, and vice versa. When one goes, the other will not be here long.

Seeing my parents' emotional torment is complete hell for me. They were always warm, good, loving people, and would help anyone they could anytime they could. My Dad was one who would, quite literally, give the shirt off his back just because he saw someone who needed it, and need I say they had a very modest financial life, very modest. And now, to have to spend their final years in this agony, is so cruel, unjust, unfair. They are not going to get any better. And so I pray fervently that God will take them both one night soon, quietly, in their sleep, and let them cross over together.

It is also exhausting just being with Mom all day long and trying to assuage her fears. And I only could do that for a few days, as my sister took my mother out-of-state, a 7-9 hour drive, and my husband needs my help as well (not with dementia though). Last month I was up 20 hours a day for a week trying to take care of her in my sister's house. It was unbearable in so many, many ways. But mostly, it is the anguish for both of them.

I hope sheshe you can get some rest and peace from time to time, so that you can still retain a part of yourself for yourself. I never knew anyone with dementia before. I never knew how horrible it can be. A fate worse than death, it is, at least for my mother and father. I knew it was bad, but until I lived it, I didn't know how really, really agonizing it is. Now I feel it. And I feel for you.

My heart breaks for you. You can't stay 12 hours a day. You can't. You will break if you do. Think of yourself as well.

My dad pleaded to go home as well, then said he just wanted to pull a pillow over his head and die. I reported it to the nurse. I felt so guilty, they sent him to a psych ward for a while. I did that, he went to a psych ward because of me.

We need to love them, help them pass with the least pain possible. My dad was treated well in the nursing home. The day before he died, they knew. They washed and shaved him and changed his pajamas. New bedding, they treated him with respect.

They were always kind to him and me. The day I went to pick up his things, I brought flowers to both floors. I got hugs and tears from the staff.

You take care of you, Deb.

Hugs

On edit: I only stayed so long each day because I only had four days, plus the two full days of driving there and back. I can't go back again until June. I was there for my Dad as much as for my Mom. And who knows what June will bring?

{{{{sheshe}}}

and when they know what they gotta do, they do it.

Please, make sure you get some relief, or you will end up hurting yourself to the point where you are no longer useful to your loved ones or yourself. But you already know this. Thank you for being a very kind person.