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raesdaughter Asked July 2011

My mom was always there for me growing up and now I feel like I am not there for her when she is in the nursing home. Should I bring her home until I can’t care for her anymore?

My mom cannot remember from an hour ago, yet she remembers me, her daughter. By her doctor's advise, we placed her in a Nursing home several months ago and she hates it. She is very kind and sweet but refuses to interact with the others. Always crying, she either paces the hallway or sleeps all day. I can call anytime, night or day, and the nurses tell me she's been crying and begging the nurses to take her to her daughter (me). My mom was a saint before she got AD. She was the kindest and most generous person I have every known. She was always there for me growing up and now I feel I'm not there for her. Mom only wants to be with her family. Before she went into the Nursing home, I had her with me for three months. It was hard because she constantly needed something to do. She'd walk around the house saying "what am I supposed to do, dear God, please give me something to do". She's 85 yrs old and fragile..I did't know what to give her to keep her occupied during the day...she can no longer hold any kind of conversation. I can't help but want to bring her back home because she is so sad and unhappy at the Home and she doesn't deserve to be unhappy...she never did a mean thing in her life.
I'm married and have our 25 year olf grandson living with us. He is a very high-functioning austistic. He is a great help to us. What should I do? Am I cruel having her live where she spends her day in tears? Should I bring her home until she doesn't remember me and get a part-time caregiver to live with us? I need your HELP!

toadballet1 Jul 2011
LadyJ...beautifully said...I am in awe of what you did to help your Mother through her final days. The caregivers on this site never cease to amaze me...Lilli

Ringo1 Jul 2011
What a tough, tough question. And there really are no good answers for you.

Bringing her home could blend well with your family and grandson; or it could be a disaster ~ with too much of a workload for you. You could end up exhausted, worn out, and resentful of your sweet mother and what she has become; depending on how far gone she is. Things could start out well and she could deteriorate . . . .

On the other hand ~ it is hard to know that they are unhappy where they are and missing family.

I don't envy you your decision; you must try and keep EVERYONE in mind; including yourself when you make this difficult choice. I know you love your Mom; but you have other family too that you must think about.

I will say a prayer for you for wisdom. You just have to make the best decision you can; with the information that you have now. We cannot see into the future.

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BridgetW Jul 2011
Prayers to you, and only YOU can make the decision.

Blessings!!!!
Bridget

Ladyjustice50 Jul 2011
Do not bring your Mom home! We just went through absolutely everything you just said. Mom was 88, and couldn't do anything anymore about 2 yrs ago. She suffered from Dementia. Her onslaught processed rapidly after 2007 when she began having operations do to old age. I.e; dual pace-maker in 2007, replaced knee in 2008, broken hip in 2009, and bouts of infections. The dementia came on fast and she wandered in a blizzard, quit paying bills, thought she was still back home in Statesville, N.C., and would always offer to 'help', but there was nothing she could do. Her muscles had turned to mush. She suffered from small TIA's, and after her only friend died in 2008, she became withdrawn and bored. She'd beg us to take her 'Home'. She started calling for her late husband, who died in 1984. Nothing is predictable with these diseases, but we did keep her home until it was a danger to her health. You worry NOW about the quilt? Think how'd you'd feel watching her defecate all over herself and urinate all over the furniture, crawling across the fall, falling and seriously injuring herself, the list is endless. Dehydration, weight loss, not swallowing her med's. She is in a SAFE, caring place with professionals watching her all day. The average patient requires 5 (FIVE) care-taker's per person! 5!! We only had us 3. My daughter with a new born! And of no relation to My Mother-In-Law, and my husband & I, both permanently disabled. Not one member of his family would help. SUGGESTIONS: Talk to the Social Worker at the Nursing Home about fixing up her room to give it a more home-like feel, with pictures, a blanket, items of her's from home that make her comfortable. VISIT as much as possible, and try to arrange outting's, even to lunch or dinner once a week. ALSO, contact one of the best resources I found over the last four years. It's called "A PLACE FOR MOM". They have invaluable resources and can connect you with organizations to help your Mom. Their also FREE. Google it!! Now, back to bringing her home. It's so hard on the family if you haven't learned serious care-taking skills, and you will neglect yourself, your family, and your Mother will not improve at all, accept for the level of love that is always there. There are also activities she needs for memory impairment. Does she read? Crossword puzzles? Play cards? She needs mental stimulation, and conversation. Proper diet, and companionship/conversation. She is getting 90% of everything she needs there. YOU ARE the major 10% she needs for HOPE. Mom died on 3/20/2011, and we are still not over the loss, but they sent her home from a nursing home after 7 months of a rehab stay due to lack of funds. She could not afford her house upkeep and the extraordinarily high price of the Nursing home. About 11,000.00 a month. Mom only brought in 6,000.- + per month. The evicted her, sued her upon discharged, sent her home, and within 2 weeks her health began to deteriorate again. We searched for 3 weeks before we found a place that would take a level 4 of her disease. She had to wait in the hospital for those 3 weeks until we got her placed in to a home. She died 2 weeks later. Peacefully, in her sleep, at 4 p.m. on a Sunday. You also should consult with Hospice. Are you prepared for what is ahead and inevitable? The price of bringing her home is also something you need to consider. Hospital beds? Wheel chair, walker, porta-potties? Medicare Nursing assistance for bathing, removing the knobs from the stove, dead-bolts on the door, you have a huge long list of things you need to ensure the same level of safety she needs where she already is. GUILT? We have guilt! Did we keep Mom too long? Was there an inadvertent level of injustice at trying to appease her and keep a promise when she didn't remember what anyone's names were, or where she was? Nothing is sadder than watching your loved one slowly die as is NORMAL at this age. You really need to talk to some of the care-taker groups or people like us who have been there. I fear you do not know how much these people change, and crying about the changes in their life is normal. They don't remember much at all. Only things that happened 60 yrs ago. Also, I'm not saying your Mother, but at one point ours did remember a small amount of manipulation that worked very well. Please I'm happy to leave a our #, and give you invaluable information to great resources that will help. Also we knew that last yr. Mom wasn't going to live much longer. BUT, a Nursing Home can enhance her life by a few years. Don't give up. Keep up your support, and utilize all the outside support you can. Please keep me posted. God Bless and Your doing fine. You are doing the right thing. Thanks for letting me input. Suzi Pethtal

LGaston Jul 2011
In Pennsylvania, assistant living facilities are not financially subsidized by governmental funds. It's different in New Jersey and Delaware. That could factor into decision making. The other problem could be in needing to move a loved one into a skilled nursing facility when they either, run out of private funds or decline in their abilities. Each move negatively impacts in their cognitive funtioning....

NancyH Jul 2011
I know there are asst living places that have an Alzheimer's unit attached, whose whole mandate is to keep their patients occupied and stimulated. Maybe a nursing home is the wrong place for her to be.

LGaston Jul 2011
Yes, Lilliput, well said. I can also add to that in that it might help you to do some reading about dementia...the 36 Hour Day.
Again, as I mentioned before, there is much information to be gleaned by checking the medicare surveys, as well as relying on your own gut instincts when touring facilities. Don't be afraid to speak up when you need to be your mom's advocate,and don't be hesitant to give compliments to staff, as well. Your mom will not get better, unfortunately. Coming to terms with that, might help you to make the best decision for yourself. Taking care of the caregiver is soooo important. If you're not taking care of yourself, how can you take care of your mom?

toadballet1 Jul 2011
Read and read and read the many posts and topics on this site. This is a 24/7 job where the patient will never get better. Be realistic about how much time you could give your mother then tripple it...that will give you some idea about the time commitment.
Bringing your Mom home "until you can't do it anymore" is disruptive to her life too. She has to make another change and adjustment to her surroundings only be placed in another NH at some point.
I think that your time would be better spent helping her to adjust to her new surroundings. Try not to react to her tears as a daughter would. Become her "care manager" who advocates for her and uses calm logic to figure out the things you can help her with.
At the end of the day, we are all responsible for our own happiness. You can NEVER make your mother happy, but you can see to it that she is safe, well cared for, and financially stable.

matusikafch Jul 2011
I would say bring her home.....if you do not have the time to care for your mom
you can take her to adult day care or a afch close to your home .
tell her you have to work so she will see you in the eveing.Good luck

lucy02 Jul 2011
I feel for you. I have placed mom in a living center and I feel so guilty for doing this. She has schizophrenia and her meds don't work well for her anymore and my husband is dealing with cancer. She's not happy there either but right now I don't feel like I have a choice. If I did, I believe I would bring her home. Give it a try and see how it goes. Just do the best you can and try not to feel guilty. I've learned that some decisions are never easy and you will always wonder "what if". You're a good daughter so please don't feel guilty.

Lrock Jul 2011
LGaston you gave the BEST answer!!!

LGaston Jul 2011
Had you looked at many nursing homes, or just this one? There are differences in how the caregivers treat their residents. A nursing home that uses their own help, without hiring from agencies, usually provides a higher level of care. Had you checked medicare surveys, to see deficiency ratings?

The reason I ask is that, perhaps, a big problem may be in the facility chosen for your mom. You do not have to keep your mom at that particular facility.

It is not uncommon for caregivers to feel guilty. Changing an adult diaper is not the same as changing a baby's diaper. Can you keep your mom from wandering off, or keeping a burner on until a fire starts? It sounds like you have a lot on your hands with taking care of your grandson. Oftentimes, caregivers do get ill or develop depression as a result of caregiver burden.

As both a social worker and a daughter of a nursing home resident, you need to let go of the guilt and be honest with yourself about the amount of caregiving you can provide. There are things you can do to ensure that your mom gets top-notch care in the facility, by making your presence known to the director of nursing and administrator. If you are not happy with the facility, explore others. Be your mom's advocate!!
Hope that helps! Take care, Lorraine :)

Caring4Monnie Jul 2011
Yes, puzzles are good too. Folding, ironing (if she is capable), sweeping. My grandma use to love to do those things. dominos, organizing (their way of course)

deedee67 Jul 2011
Yes please do bring her home. Let the last years of her life be with you. Let her fold and unfold towels and find simple but repetitive activities to keep her busy. Good luck hun and hugs!

Caring4Monnie Jul 2011
Wow, what a question. It sounds like the nursing home thing isn't working for your mom. If left there she will most likely begin to decline on her health quickly. Not neccesarily because they are bad to her but just because of her state of mind while there. I feel for you because none of the answers are easy. Bringing her home will take a toll on your family and will be a lot of work and sacrifice. It sounds like she isn't doing to bad now but remember her health will only decline from here. You will get her home at the best she will ever be and it will only go down from there mentally speaking. If she is otherwise in good health she can last another 10+ years. Are you open to such a big sacrifice. I take care of my husbands grandmother who has alzheimers and she is in mint health other than her peranoia and mind. We have had her living here for 3 years now and I can only say it's been very taxing on the whole family. It's a lot of work. If you can afford to bring help then it won't be so bad. I can't so I spend every waking minute with her. She is my shadow. It's been hard but I have left her for respite care to go on short vacations and have seen a huge decline on residents at the nursing home that I saw just 6 months before. They are for the most lonely, lost, sad, depresssed etc. Not to say that she won't experience those things at home from time to time but family is familiar and it feels right. So even in their lost state they have a sense of home and belonging. Bottom line, if it were my mom I would do it without question. If I had help to take breaks and walk away from my shadow even more so. It's not easy but worth it in the long run just as long as you are well aware of what you are signing up for. Some elderly become abusive physically and verbally, they refuse to bath and the list goes on as it has been in my case. It's a huge commitment. Good luck and God bless you both. PS. if you do decide to get her out the faster the better. That state of mind makes them decline quicker. You don't want to bring her home at her worst. You want to enjoy her at her best. Also, your children will see by example what you have done and most likelydo the same for you.

anonymous101100 Jul 2011
YES, I think you are talking about my Mom! She too was the sweetest thing on two feet!! She cried in the rehab and home she came with me!! Yes its horribly hard, yes she can barely speak, yes she is incontinent, yes she had trouble walking, and yes, I have no life unless I hire some help but OH I Love Her and thats all that matters to me! My husband and son and I sing to her at dinner, she remembers the tunes and smiles ear to ear. She lives here , in a family with company and dogs and she is comfortable. She isnt on all those drugs they wanted her on, she never sits in a wet diaper, I warm up her huggie wipes, and I am always here to hold her hand. At night, I tell her I am spending the night with her and she manages the words, "oh good" with a big smile on her face. and then I sing her to sleep. I could show you so many pictures and videos of her having fun despite all of her late stage alz issues. She puts a smile on alz/Dementia!
Yes, put yourself in her shoes, wouldnt you want it. We dont want to burdern our children, no one does, and she was the last person to want to burden anyone, but she was dealt a bad card--alzheimers/dementia, and its not her fault. I love her to pieces. Do what your heart is telling you, its a huge toll but so worth it. And, not until, forever.
hugs
Luvmom

kimbundy Jul 2011
I would bring my mom home with me. My mom has had AD for approx 12 years now. I have my mom with me. She has been with me for almost 2 years now. Yes, it is hard sometimes. Her needs change and I have to be sensitive to all her needs. My mom does not know me to be her child. However, she remembers my youngest brother because he looks similar to the way he use to look. I keep her busy by giving her all the old junk mail. I give costume jewelry and I dress her in really nice pajamas - things I remember her liking to do for herself. Sometimes we play cards. She doesn't play well but, she can play a little and I help her. My siblings are not patient with my mom. There are 6 of us. She seems to like living with me and as long as I can, I will keep her here.

195Austin Jul 2011
I would agree with Ladeeda and Linda and Ed they are all wise people who have walked the walk if it is possible you should bring her home for you as much as for her-if she still has not adjusted to the nursing and you are able to manage you should autisic children usually have a lot of love tp give and also keep in mind the points magnam made-please let us know how things go-if you are new to AC you will find the most greatest people hear-I was blown away with the love and support I got while taking care of the husband-I somehow stumble upon AC and was in the black hole and the people here-that was well over 3 yrs, ago- they saved my sanity.

Eddie Jul 2011
RAE:

Whether it's a good NH or not, as long as she stays there you're going to feel like a traitor. I'd bring her home and pair her up with your son so she can have something to do. If it gets to the point you can't really tend to her needs, take her back. I'd shudder at the thought, but at least you know you did the best you could. Good luck sis.

-- Ed

notrydoyoda Jul 2011
Why did the doctor think the nursing home was the best place for your mother to go?

Have you discussed the possibility of her going home with the doctor connected with the nursing home? What does he say?

Does the nursing home have a social worker and if so, have you discussed this with them?

Have you asked your grandson's doctor how he will do in a changed home environment with your mother there?

What does your husband think about the situation?

How is your own health and your husband's health?

What meds is your mother taking? Is she on any antidepressant?

I wish you well as you work on whatever is the best not only for your mother, but also everyone else involved.

ladee1 Jul 2011
Yes bring her home... I know you are torn up and need to know she is safe and happy... There are many things she can do to keep her occupied. I got Ruth some large markers and printed off pictures of butterfly's for her to color... but she would also help fold laundry, who cares if it wasn't folded "right", sweep the floor, help put the dishes up, help dry dishes, (the safe stuff, no knives), get her some big nuts and bolts to take apart and put back together.. get her to help make the bed... it won't be long and she will not be able to do those things, so enjoy her while you can... good luck and let us know how things turn out... hugs to you..

linda09 Jul 2011
if ur mom is hapy and doesnt give u troble . i dont see why she cant come home . my dad did the same thing at the nursing home . he would get soe sick and cries and hollars for me all day and all nite . doctor there said he blood pressure is so high and its gong to kill him . my brother called and ask me if i could keep him here 1000 miles away . i talked to my hubby about it , he said go get him . so i drove down there and brought him home , took us 3 days to get here cuz we always have to stop at hotel room to get him rested up .
i dont regret it at all , i am happy that he is here and i dont worry about him much . but one thing im not too happy about is that im a prisoner inmy home . my hubby would let me go out when i needed to , daughter would stay here and watch pa for me so hubby and i could go out .
dad is much happier here and he gets to see his grandkids and me every day . he just want to be with his families , he can not walk anymore and its a wear and tear onmyback to help him get up and get inthe wheelchair and all . but u know what ? i dont care anymore . im just as happy he is .
give ur mom towels rags and have her fold em . give her a rag and tell her to dust . giveher anything to do , hard boil eggs tellher to crack those eggs . give her a broom and have her sweep the kitch floor , anything simple when she gets bored . i wish i could do that to dad but nope , he sits and sleeps tons and or watch tv and eats tons . whichis fine with me cuz i only have one dad left and it wont be long the lord will take him away from me .
nursing home scares me , one cna takin care of 20 or so patinces , it sucks ! my dad must have one on one . and he s happy camper .... goodluck ...

AnnieGirl Jul 2011
You poor thing. What an awful dilema you have. We each have to make our own decision based on what we could cope with. If it were me, I'd bring her home and have a part time carer if you can afford it. It all depends on whether you can cope. If you don't bring her home, how will you handle looking at yourself in the mirror knowing that she was so upset at the end of her life. At 85 she cannot have too many more years left and you say she was such a wonderful Mom. You are so lucky in a way that she knows you. I wish my Mom knew me. I've been caring for her for the last 13 yrs and she's hasn't known that I'm her Daughter for probably 8/9 of those years. At the end of the day, you have to do what is best for you as long as you can live with the decision whatever that is.

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