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My grandma was very healthy 86 after a few infections and a long hospital stay she is in hospice. I brought her home two weeks ago, I have a sister that lives about 10 minutes away grandma raised yes both. Grandma and I share a house. We thought grandma only had a few days, as she wasn't eating or drinking in the hospital. She came home is drinking water pretty good and ice cream I make a high protein mixture. Prior to getting sick mentally competent. Luckily I have church people come over a few days a week so I can take a shower or go to the grocery store. My grandma just had a bif Bowen movemrnt thst went every where I had to cream it ou, she is bed ridden, mentally she us not with it any more she fought me the whole time then though I was a nurse at the hospital ans wanted to go home, ladt night she had a rough night up every hour so I got no sleep and where is my sister no where to be seen, I am tired smell horrible as u didn't do well with poop clean up, tired, barely eat I love my grandma and will make the end of her life the best I can, but how do some of you do it for years? How do you not hate family that doesn't help? My sister and I are close she has shown up for 30 minutes every few days. Once she did stay long enough fir me to take a shower and she acted like she was giving the best gift ever. I have list respect for her. When I mentioned to her about having to get up so much in the middle if the night how tired. Was she said well you want to gave a baby you have yo with them so you are getting use to it, my grandma was an amazing woman. Though during Christmas Day we got our Christmas miracle she was lucid.

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It is normal for the elderly to be more sensitive to all meds. Mother will go out for 24 hours on something like herbal meds (melatonin). Maybe give her a small dose of melatonin at night, I do that with mother when she can't sleep. It also helps with dementia due to serotonin uptake. Check with her doctor when in doubt. Most doctors no nothing about herbs, but you might get lucky.
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Nikki1234, I do not think you sounded bad in your response at all! I have been dealing with responsibility for my parents for 4 years now...and NOT as a 24/7 caregiver. Plus I am 71, my girls are grown and it's me and hubby at home. I DO have a husband with early Parkinsons, but he 's still pretty self care. I DO have a home based wedding business that has gone down the tubes in the last 3 years, when I intended to grow it and sell it to add to our retirement savings.... IF I were in your age bracket and family situation, I would NOT have agreed to take on caregiving. You are a mother and a wife. You said your husband is away a lot, I assume because of his work or such. As a mother of young children, your primary responsibility MUST be raising your children and giving your love and time and teaching/parenting to them. If your Mom is young enough that you can see you might be taking on 10 years of direct caregiving....then YES....you MUST make another choice, because that is time that your children will not have all their MOM could give them. And that's doubly important if your husband is not there regularly to be their Daddy!! There may be other ways you can help...for example, perhaps you could take on paying some of the bills, or researching some of the stuff that always comes up in the way of financial stuff, emails communicating with others over all the care needs or monitoring finances. Perhaps if you are close, you could offer to be the one who took her to medical appointments and kept a log of what the various doctors said during appointments and perhaps even handled the scheduling of appointments. That would not take you away from your family duties as much as 24/7 caregiving. If Mom has the resources, perhaps having some caregivers come in to help the family, whoever is responsible, get breaks. Perhaps you could help by offering to stay with your mom for an afternoon each week, or time while your kids were in school, so whoever IS the caregiver, can get time off for their own needs. Just look at it all a different way . But you are not coming across bad in anything you said....
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Things are better, hospice is great and I have hired help, though I love looking on Facebook and my sister is at a New Year's Eve party last night. I love that she gets to continue with her life and I don't, but I will have some of the best memories ever of this time with my grandma. I have had some very special moments with her. Grandma is at the end of her time in this earth, pro balky days. I really love that my sister is telling what she wants of grandma's. Well since grandma and I have lived together for 11 years, though only needing care for two months.
Grandma and I co-own the house and I POD on her bank account, and I have in writing everything in the house is mine. I have no problem my sister having things that are special to her, but right now is not the time to ask. Just saying. You can't help with grandma and you want are her heirlooms selfish people
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Yes, get help! Your health is a priority! hugs
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Oh wow,you sound like you've been dumped in the deep end and the sleep deprivation is creeping in..... and all completely understandable. May i just say I too am at the beginning of the caregiving journey and very quickly identified the families dynamics (unhelpful,condecending and critizing). I do have a young family and hubby works away. Chosing to be mums caregiver was going to put enormous pressure on my family. This could be at least the next 10 years of my life which is my childrens entire young life. Ive recently made the choice that my sister (who is poa and an ungrateful person who will never help me) could also be Guardian. Its quality of life for us and our children ive chosen and yes it has come with some guilt that im dealing with but im still there for mum as you would be for your fab nan. Take a realistic approach and give yourself a chance at quality of life. You are most deffinately not doing anything wrong by doing so. Apologies in advance if anyone is offended. Ive just reread my response and it sounds vey "hard ass" x
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Any caregiver will burnout after that many years! Get help now! Either NH or AL.
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Yes, my grandpa was a veteran I will have to look into that. I had to give her the anxiety medicine last night. Now she us sleeping all day. She was totally alert yesterday. Is this normal. I also gave her a low dose of morphine. Is that normal.
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Question #1 You said your granny was lucid on Christmas day. If there is hope for keep her out of homes and hospice. My mother is 104 and is now going down hill, but since your granny was healthy until just a little while ago it seems that you are bring her health back. Get help, but don't give up on her. As I said in my previous post, If your grandpa was a veteran, there is likely a pension for her to help you care for her. No it's not easy, but at the end of the day you will have no regrets.
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1Teach1Cory

The experience you are having is really quite frequent. The answer is to set up a schedule for you to have a break and treat this break time as a job. Do not let your break be disturbed or overruled. (You will find plenty of times when you simply can't meet your own needs. You are the best support your Grandma has.)

I have worked with caregivers both hands on and long distance for over 25 years. My advice to all of them is to remember you must be health first. Sounds selfish, not at all, if you can't get the breaks and rest - how will you be able to provide the support necessary for your loved one? Make a list of help you need, use this list to answer the frequent question 'Can I do anything?' or 'How can I help?'. Take people up on the necessary help to give you more time to provide quality caregiving. You will be surprised at how much help is available. Check with your church (as you mentioned), get extra help with Hospice (they are there to help) and check out Respite Care.

Make a list of what you would like to do when a out of the blue help is offered. Keep a Respite Pack for yourself. That pack should have a blanket, a book or magazine, something wonderful to eat (something you would treat yourself with.) and be sure to take advantage of each moment. I know you are tired (been there done that - as have many stories from caregivers who have used this blueprint and acknowledged how different the caregiving experience was after implementing the plan.
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it's impossible to do this job without help. eventually something will go very wrong & you will not have control of the results. take action to help yourself now, while you still can. i feel very serious about this. i thought i could handle my mother's dementia & catatonia by myself (while caring for another disabled person in the same house) & semi-disabled myself. i could not & my mother had to be hospitalized. please hear yourself calling for help & take care of yourself first. we are raised to think we have to do it all alone, or we're bad, have no love, whatever. my mother herself told me this: 'you have to take care of me'. but it turned out badly for her & i can't forgive myself for waiting so long to do things right. she would be better off today if i had let go sooner & gotten real help. in the end i was only sick, exhausted & furious. not good for me or her. we are given lies about what love is. we are told love is sacrifice. let's just get rid of that idea & see the truth.
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Oh and Cory, my husband and I have had his nearly 86 year old Dad living with us in our home nearly 12, TWELVE years! Twelve years of the slow decline, now drastically speeding up! So I have been on both sides of the coin, and we Loved/Love our parents Very Much, but it is Really Really Difficult! Extremely hard on your marriage and it completely changes every aspect of your life! So really think this through. It not a bad thing if Granny goes in Hospice, and it may be the best way for you. You still Love and respect her, you will still see her often, and she would still be being well cared for with highly trained staff who have committed their life to caring for the sick, it's their calling, its what they want to be doing, they are Hospice Nurses, and they are Tremendous human beings! I'm still trying to figure out how to get in a Vacation/Respite time away next year!
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At his point, if she´s already confused, a sleeping pill might help so she isn´t awake at night!
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Yeah, I know what you mean man! We have both parents; they aren´t bedridden, but are nasty olefarts, and my father GreedSer is quite greedy (doesn´t dish out a penny for his food & care) & mean, has no respect for women...my parents never had to care for their elders, but expect EVERYTHING from us. You have to get help, it makes no sense for 1 useful person/caretaker to become burnt out to save someone who unfrotunately has become useless...find out what type of support your community provides. Unfortunately the elderly often act worst with their own family, or anyone who is there all the time! Good luck & do take care of yourself!
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Yes...Pam is totally right. If she's in hospice care, they will increase the care needed and all you have to do is ask for a meeting or care conference with them. You can still provide care as you are able....and obviously if she poops the bed when they are not there, you will get to clean it up, but if they are coming and doing bathing and other care, and volunteers come more often to give you a break, so that you are rested and able, things will improve. Also, as your grandmother gets to where she is not eating, things like pooping will stop or slow down. Hospice should also even know how to get her on a schedule where she poops more at better times, like when they are there. You may need to get night volunteers so you can sleep....or at least part of the night, or learn how to stop and take naps in the day time too. If you are in this until death....no matter how far away that is, you must commit to caring for your own needs first. You cannot give another your best if you are not at your best.... I wish I was as good at DOING this as I am at talking about it...but it is key to being a caregiver.
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1Teach1Cory, first off, Yes, it is Very difficult to do, year after year after year! Not everyone is cut out to be long term caregivers, and that doesn't mean that you don't LOVE and RESPECT your Grandmother. At the end of your post, you said, that your sister said that this "up all night business with Granny", was preparation for you wanting to have a Baby, which leads me to think that you are still young, and of childbearing potential, which is under age 43, likely. No, this is nothing like having a brand new baby, nothing! Unless you have a real calling for Nursinghome Nursing, You, my dear friend are going to need way more help than you are getting! While others are going to say that they are proud of you, well yess, I'm proud of you too, but you need to re-evaluate whether or not you can manage your Sweet Granny at home, with a little assistance. It took my 6 VERY INVOLVED siblings ( all over 45, all parents of 20 something children, so been there, done that types, and all of us suported by our spouses at home), to manage caring for our Mom, ON HOSPICE, and in my eldest sisters home, 6! And even with all that help, we were still tired, as of course, we were all still working, and married, and parents, and home owners, do you get the picture? IT'S REALLY HARD, AND YOU MAY NOT BE ABLE TO DO THIS, AND THAT'S OK! So, while I applaud you for trying, and if you still insist on keeping Your Granny at home, be sure you speak up to your Hospice Social Worker, and the Dr and Head Nurse, and tell them that you will need every available service that they offer, in order to keep her home, and then, sit down with your Sister, and have an honest heart to heart with her, and explain everything! You said that you were close, and she may be scared of losing your Gran, not cut out for caregiving duties, many people are Not, and that you need her to do other things than hands on care, if this is the case, like Granny's bills, her grocery shopping, errands, so many non medical things, house cleaning, laundry! You and your sister need to come together to common ground. If you don't have that very frank talk with her NOW, right now, you may end up so resentful of her, that it could end your sisterly bond, and there are endless stories on this website where families stopped loving and supporting each other over misunderstandings, and your sister may have other things on her mind, or is stressed and afraid, you have to be very honest about your feelings, and let her be honest about hers, and try to come to an understanding of how Best to care for Gran. Your Hospice group may be able to place Gran in the Hospice unit in your town or city, many have those, and they are much different than the ordinary Hospital surroundings, many are homey, with living rooms and kitchens, and especially, Very Well trained, and Loving staff, I know, as our Mum spent the last week of her life in the Hospice Hospital, on the advice of our Hospice Nurse, and it was a gorgeous facility! I feel for you, I really do, and I hope you make the best choice for You, and your Gran! There are many ways to go, but they all involve research, understanding, Love and a lot of well trained hands. I wish you the best!
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Don't give up hope on your granny. If she was lucid on Christmas day, she can come back. My mother is 104. Fortunately she is pretty good right now. Just watch out for your granny's UTI problems. This is the thing that will make them crazy even if they are relatively with it otherwise. Was your grandpa in the service. If so, apply for Aid in Attendance for your granny. It could get you a pension for her of about $1100 per month so you can pay for help to come in. Go for the house bound status with your granny. That is the easiest one to get and have a notarized statement from a caregiver that they are charging you for caring for her. If her medical bills surpass her income, - including the caregiver expense, you should be able to get help.
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YOU ARE LOVED~GOD IS WITH YOU.....
Allow hospice to do what they do so well.
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1teach1cory all of Us Who are full time Caregivers do it because We love the Person We care. Don't be too hard on Your Sister because She does not possess Your qualities. Get as much help as You kneed, share the work load and mind Your own health. You cannot do it on Your own.
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Trust me, it's not easy. Have been caring for Mom now for eight years. It wasn't hard in the beginning, as she was mentally with it, and I could leave her alone and have time to myself. However now, it's totally different. I am in the situation you are. I don't really know what to tell you other than to seek help, if you are not up to it. Not everyone is cut out to be a caregiver. It's no fault of your own, just remember that. I had experience as a caregiver in the past, working with AIDS patients back in the eighties. It's hard, and takes a great toll, both mentally and physically. Like someone else said, I would talk to the people at Hospice, and get help. You can't do it all by yourself.
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You are an Angel and God has a special place for you in Heaven. Your sister will have to answer to Him in the end. I wish I had useful advice because I know exactly how you are feeling...alone and desperate. I just kept praying for strength and my Mantra became "God will never give you more than you can handle". At the end of Grandma's life you will have a clean conscience. Integrity is what you do when no one is watching. Challenging times bring out a persons TRUE nature. Yours is beautiful. Talk to as many people as you can. It will help you out to "get it out" and every once in a while, someone actually has some useful advice. I wish I could give you more useful information.. I all I can say is try to get sleep any chance you get. And then try to get through one day at a time and put one foot in front of the other. I have so much respect for you and none for your sister. Just keep telling yourself "this too shall pass". Support groups are great but I couldn't even find the TIME to get to them. Websites like this are great. I wish I could be more helpful. Big hugs. Stay strong.
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Hospice is the best. On 8th month with hospice-- my wife who has FTD. Everyday--wash and care and order meds. They supply diapers and a hospital bed. And wipes! They will supply doctors through the main assigned nurse. They also have social workers who come. If you need to get someone into a home they will help. And they will arrange for temp placement if you need to get away for a week or so. And this is all paid for by Medicare! Or just put her in a home and visit. There's nothing wrong with that.
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Is your grandmother enrolled in the Hospice at home care? This is a medicare program that provides considerable at home care. In my case, with a 77 year old wife with ALZ, an aide comes three times a week for bathing and general hygiene, and a nurse twice a week. The program will also provide up to five days per quarter for the patient in a nursing home, as respite time for the caregiver.

Hospice is not just a six month end of life program. It will also provide at home care for an unlimited time for those with diminishing health, not expected to improve, such as Alztiemers.

Even with some help, sole caregiving is very difficult and stressful. Well meaning friends and relatives cannot realize the problems involved, but it is what it is, and you must provide some time for yourself, or you will end needing care.

Look also for local support groups and volunteers.
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I am going through it also my 4th year,, of watching Mom (93) She has Diverticutis,, I am cleaning up a lot after her,, got her diapers she through them at me,, Sister lives 4 miles away been here 6 times all that time,,, stayed 20 minutes,, ,, I can make it to the food store or drug store (they are 5 minutes away but I always worry about, when I get home she may have fallen,, Had firstalert she wouldn't use it,, (Don't get it they just want money big scam),, Tried hospice will only come if she has docters note saying she has 6 months to live,, I haven't done anything for myself all that time,, Glad holidays are over,, She looks out window thinks everyone got new Christmas lights , They look like plane lights over the houses,, I told her they are,, airport not far away,, She still says no they are new decororations, House across street has them than house down the street than house nextdoor,, .... When she does pass my sister will show up telling me how many things in the house are hers,, I am burnt out,,
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Very hard for you. My heart goes out to you. In most families, it does come down to one caregiver. Often other siblings drop in and sometimes,criticize!! It is the same way in most families.You must ask for more help from others: especially HOSPICE. They are the experts in this field. Take the strain and stress off you.
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Talk to hospice. They have volunteers who will come and be with your loved one. They can help put you in touch with other services too.

Talk to the Elderly Care department in your city/town and see what services they can provide. With my aunt we got someone to clean (very cheap) and do laundry, meals on wheels, and someone to come in to give the caretaker a break.

And when you vote, don't forget that there services need to be funded to exist.

BTW, hospice is a short-term end-of-life service. When they are called in, it is not expected to go on for more than six months. This too shall pass, and you can take pride in what you've done... BUT TAKE CARE OF YOURSELF WHILE YOU GO THROUGH IT... else you're no good to anybody.

And yes, adult diapers!
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Very difficult, but I am with reverseroles. Let us believe that we are a single child, get help from maids and take care. Why don't you use diapers for your mother. I too did that and am catching up on sleep, but even then they find some other reason to get us out of bed in the middle of the night. All part of the responsibility we took up. Smile.
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You do what you are doing and continue on. Getting help a few hours a day is a life saver. I am finishing up 8 years now. Never thought I could do what I do either, but live and learn I guess. My Mom cannot walk, or talk either. Hang in there and believe me, youre better off without the lazyass siblings. Take the high road and give your Mom lots of love, we get what we give.
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Get someone else to take over. You have to think about your self too. You have tried. I myself am thinking about getting professional care in here too and moving out. My day to day life is more depressing than I have let people know. You having certain messes to clean up all the time endangers your health too. And I dont have a lot of people to talk too and that understands that I am trying. You need a life too
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Please follow Pam's advice - it is for your grandma's good as well as your own.
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Please tell the Hospice Nurse that you just can't do this any more. They will help you and help grandma. You did your best. Let them take over.
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