Thinking of taking my Mom with dementia out of the nursing home to live with me. Have I lost my mind?

This decision is about what is good for mom, not what feels good or what looks good to outsiders Like everybody has said, and what the social worker on my mom's unit told me just today, moves for dementia patients are inordinately excruciating. Once there is stability, it's best to leave it be.

My mom is in the middle of a multi-day profanity laced temper tantrum because she is being moved down the hall. She was screaming at the social worker and head nurse today, so much that they had to call me at work to inform me of the paperwork process they need to do for this behavior incident. Lord watch over her new roommate.

I found Linda Byce's blog today: Living Under House Arrest. It's the story of her caregiving at home for her husband who is a grown up infant due to brain damage after a heart attack. indabyce.blogspot/ It's a real hard look into the day to day impact of full time caregiving on her.

Having the ability to step away, sleep all night, eat a meal, take a shower, take a sick day have a value (to me) that far exceeds the price of nursing home care. My home is my sanctuary. It's where I recuperate and recharge for the next round of stress, worry, and difficulty. This emotional and physical shelter is how I cope.

My Mom does not have dementia, but has many ailments and requires full time care. I have cared for her in my home for 7 years. I know I give better care but also she wouldn't make it anywhere but here because of her personality. I also can't afford much help from the outside so that is why I answered earlier about keeping her where she is now. I know it's important to follow your heart but I also know what it is like the few times I have had a bad flu bug and been sick and not have back up. Life offers us so many twists and turns and we must consider all of these things when taking our loved ones in for care. I miss many family things and people say well just call the agency well at $28.50 an hour it adds up. The agency is wonderful and the care has been great the few times they have been here. I would call around and check prices for help if you are still considering the move, but please think long and hard about this and talk to her doctor also. Your health is important too.

Daisymae09,

When I used to go the the NH everyday, my Mom was constantly asking me to take her home. She thought she was in a bad hotel. I finally decided to do so and it's been a nightmare. Every time she doesn't want to do something, she says 'put me in a nursing home'...I wish I could put her back.

I took my Mother out of the nursing home because they did not take good care of her. Now, I wish I had NOT. She has dementia, COPD, CHF and too many other ailments to mention. If you and your Mom have a good relationship, that will make it easier. Just be prepared for the repetitiveness and all the questions. Every day will be 'Groundhog Day' all day long. Good luck and God bless.

Pandoralou. I have my mom with me and she is 92. I wouldn't have it any other way. Just hit the 6 year mark and I still know I made the right choice.if you get a.m. care ( up bathed dressed and fed) it makes it so much easier. Also get a few on- call women. My Mom cant walk or talk but she laughs when we joke and sing with her .
She Loves to have her hand held and be hugged. When I ask her for a kiss she gives me one. Part of her is still in there......priceless! Follow your heart.

Lol!

I admit, I don't know all the specifics, but as a daughter whose Mom w/dementia and NPD, I say, YES, you ARE out of your mind, AND IF YOU'RE NOT OUT OF YOUR MIND YET, YOU WILL BE AFTER SHE MOVES IN WITH YOU. And I speak the truth in love, my dear.... from the loveliest of experiences..... and from wishing only the best for anyone in this dear group of loving caregivers....

Pandoralou,
When you and your mother visit at the nh, does she sound like she wants to come home? It seems that family caregivers can be trained in the same way that CNAs can, with the various workshops on caregiving skills. Home is always the best place for families

Thank you everyone. I saw my mom today and she really is happy where she is. I am going to leave her there. I do visit often and I guess she is getting good care, I just get frustrated sometimes. Thanks for helping me to think it through.

I would keep her where she is and visit often and take her out when possible. It's wonderful you have no money problems but I think you have a good situation as is for her. We never know what may come up in the future.
You sound wonderful and so does your Mom!
Best Wishes

I would say absolutely do NOT bring her into your home. I am going to turn 65 soon and have two sisters who do help out but the main burden of care for our 92 year old mom is on me. We did not get along when I was a teenager or young adult. I had to move back in with them at one point in my life and made the comment I would rather live on the street than live under the same roof with my mom again. Through the years our relationship got much better and we enjoyed walking together and going to eat and shopping. But now that she has been in my home for a year and a half old resentments and hurts have resurfaced. I had thought at this time in her life some of these things might be resolved but it will never happen. She has always been capable of "rewriting" history to make it work for her so I have to just move on but it's so hard with her here and still giving me guilt trips. Keep your freedom and independence and privacy or you will be exhausted, resentful, angry and worn out all the time.

it is worth my mom lives in her own apartment , but i live 10 minutes away from and she is on medical alert. Its wprth every penny. Those nursing sometimes smell real bad. DO you know they only give bath once a month. I use to volunteer in one.

I am fortunate that my mother has always been sweet and caring and even with Alzheimers has remained sweet and loving. It is a hardship, nonetheless. So much to do, to take care of, and to watch her deteriorate is all stressful and depressing. Not to mention exhausting.

Each case is different. Be aware of your and your mother's needs. Be aware that her illness(es) are going to get worse, not better. Home care works for some but by no means for all of us.

Good luck.

PAm IUam 68 and taake care of my mom who is just about to be 91 and yes we can.

I took my mom out of the nursing home in December and I glad I did she looking and feeling better becasue of the care I give her. I still work full time and have several care givers who look after her one feeds her and one who changes her. I feel better knowing I don't have to go to the home to visit her. I can go and get kisses and talk with her everyday, without limits. I not saying it's always easy but it's worth it to me. I know I can't always do what I want to because she's there and can't walk but I know if was me she would be there for me.

To pandora,
You have the best option of taking your 92 year old mother to live with you. She is physically healthy except for her dementia, but which can be taken care of even at home. You can hire caregivers 24/7, if needed to take care of your mother when you are not home yourself.

There are lots of disadvantages in putting an elderly loved one in a nursing home. I just lost my husband a month ago, who stayed in a nursing home mainly because I couldn't physically take care of him at our home. He was paralyzed on one side, unable to eat, unable to speak, unable to walk. If I knew at the time every single detail about the financial impact, and the policies of insurance companies on home care I would have taken my husband home even if he needed 24/7 care. Now I have learned a lot from all the deficiencies that I and my husband experienced from nursing home care. The state rules in Michigan and I think even with other states allow a ratio of 1:23, meaning one nurse assigned to 23 patients, and nursing assistants 1:12 or 1:15. With these statistics in mind, we don't even have to discuss the details of what is transpiring in every shift. But we could, and I can expound on every detail of it with you if you wish. The nurses are spread thin by the administrators and nursing managers. So how could these nurses even take care of patients with their undivided attention? Same thing with the CNAs, they are spread thin. They are expected to take care of so many patients, which is humanly impossible to do within a given shift especially depending on the physical condition of every patient or resident. And yet they are paid low wages for their physical jobs. Some nurses and CNAs are good, some are not. And those that are not just do their job for a paycheck. Those that are good may have a passion for that kind of caring, and you are lucky if you have them. In nursing homes, you will find yourself encountering issues with the nursing staff such as medication errors, delay, in fact too much delay in nursing care, for example, if a patient is incontinent, and needs to be changed, cleaned and made dry, this expectation will not happen as you want to see fit as needed by your mother for example, because they are always short-staffed. And this delay in taking care if incontinent patients lead to bed sores or skin breakdowns. You will also find good and bad characters or attitudes among nurses. There are nurses that will deliberately not give medications or will skip them because they have other ones to take care of. Or if they have to give a patient too many meds, they give the meds to the patient all at once in a lump sum. This is not good because meds can have drug interactions with each other. But this is the reality of things that transpire in a nursing home. It is not all bad, because nurses generally take care of them good, but these short-cuts are sometimes or even often inevitable for the nurses to not be behind in their medpass. So from this alone you can see neglect happening. And most of the times, patients in nursing home die due to neglect. They deteriorate faster because of this. Families who do not watch out about their loved ones' pharmacological regimen may be surprised one day, for example, why their mother or father all of a sudden became withdrawn and despondent. Families must watch that nurses are giving the right medication, on time, and the right dose, and the right route (oral, or tube feed, or injectable ). Families must watch out about the assessment skills of nurses. How do they assess your loved one? Also their clinical hands on skills. Also there must be direct and clear communication between nurse and their assistants. Families must know which skills the nurses can do and those skills that the CNAs can do to your loved one. People with dementia are particularly vulnerable in nursing homes because they are don't wholly cognitive of what is happening to them or around them. Therefore they are an easy prey for neglect and mistakes of these nurses. Whereas still home, you can best monitor these care. And you only have to deal with one or two people. There is no bureaucracy to deal with. I can go on and on .....on this with practical true-to-life examples because I was a witness to my husbands's care, and I am a retired hospital nurse myself. Pandora, you are on the right track to taking your mother home. Thanks for giving me the opportunity to share the realities in a nursing home vs. home care.

From 30 years in the senior care industry and having attempted it in my home, you have a proven 98% chance of failure that will effect your own life and your relationship of mom.

We love having our Mom at her home. Between my brother and I it works. She is becoming incontinent - but we are adjusting to that also. My Mom too has funds to pay for some in home care when we need that.
I feel very fortunate that my mother is kind, quiet, nice, compliant, and funny. Her dementia seems to get worse every day but her mood stays the same. Is it stressful anyway? yes, being "there and present" with her 24 hours a day is stressful just as taking care of a child can be. We are lucky she isn't a wanderer and that she doesn't sundown. Her two best friends live on either side of her (they don't have dementia) and she has her dog. So she is happy and so are we.

I should add that I am an R.N. & do this now out of love & not for $.
I do play the guitar a lot for my own sanity. I also PRAY a lot.

I can only speak from my experience.
I have a client who is 92 yr.'s old & cares for her daughter who is 63 but cognitively is a 3 year old. I had to call her son in another state 2 days ago for the mom is showing signs of depression, weariness, not able to keep up with any of the paper work needed for care & has macular degeneration & needs a walker& is not as her son stated on the phone, "Sharpe as a tack":...The son is a physician, also in denial over the entire process. I had to totally let go of this case. With the son's denial & he is the POA, DPOA too, leaving these 2 woman alone in their home & not safe at all.
I will be calling Adult protective services today.
The younger woman is incontinent & wakes at night & has gone from bedroom to bedroom to sleep in other beds & has ruined all the new mattress in the home. The mom is so ready to toss in the towel. I have attempted , with the help of another, to have house repairs done & to get the piles of paper work completed, with out much success. the mom can't give enough information to fill out the 27 page form for her disabled daughter.
What I did was mail the form to the son, after he was not responsive to me on the phone, as well as other paper work.
I believe that Adult Protective services need to be involved.
I see these 2 woman as keeping each other alive but the daughter has stopped eating, smokes ALL THE TIME, it just is not safe.

One must take all of this kind of information into consideration when looking to care for someone. I also care for my husband who suffers from Solvent Dementia. What I do is a full time job. I have to keep my self centered.
I have to be hyper-vigilant. I have to come from a place of peace & love.
Easy words to speak but I live this.

I would adviser anyone considering to become a full time care give to think twice before making the move. It will all manifest as it should.

I pray a lot.
Blessings YOU ARE.

Yes.....this situation pulls at your heart strings. You have to be able to live with your decision....I believe there is no wrong or right answer. I will say this (someone who has gone thru this)....Check on Nursing Home if they allow overnight visits do so. Make surprise visits at different times of the day,,. AND
very important ...keep an eye on all meds now and in the future....if need be get second opinion if Mom really needs what is being advised AND what are the side effects sometimes worse than what the ailment is. It is a hard adjustment to most of the elderly so since your Mom is already there and functioning and seems to have adapted you may want to take a hard look at that. I know the heart wants to do something else but in the big picture are you qualified to take care of her or will it throw her into a tailspin to go home with you only to go back in the near future as it may become increasingly difficult to manage her disease
Being a good daughter to me is putting her needs first doing your best to be there for her and making her as comfortable as possible. If she was anything like my Mother, she never wanted to be a burden to her 3 daughters. We never looked at her like a burden cause we loved her so much but no matter what it is still difficult whichever decision is made....Have a good support system and it is great that you are using the resources from Aging Care.com. It really helps. God Bless You and your Mom on this journey.......

I just want to add: do not bring her to your place out of guilt! She is being properly cared for, has a social surrounding with activities. I am in agreement with those who say, visit her often for as long as you want, take her to lunch or have lunch with her, go to family events at the NH with her, etc. She could be brought to your home for family gatherings even, if she's able. YOU, however, will be a better daughter/caretaker by having your private time each day. Trust me, I know what I'm saying. I had my mon in a NH for about 5 yrs. And did all that I'm suggesting to you. It was somewhat demanding but NOTHING compared to what I'm going through now - taking care of my husband at home with NO breaks. Remember you will be responsible to run her to every DR appt., give up all of you activities - EVERYTHING - you might say "give up your life." Listen carefully to advice offered and think it over well!

do what your heart says.i have been the caregiver to my mother in law for the last 4 years. she had strokes,completely incontitent, confined to a wheel chiar,in advance of dementia, puree diet, she is on 4 meds, me and my husband are her sole caregivers. and i would never think of putting her back in a home. her doctors and other family said she wouldnt make it a year outside of the nursing home. well here it is going on 4 years. i dont know what state you live in but i get paid through medicaide to care for her. am not going to lie and sayu it is a breeze cause it is not. it is trying and works on your nerves. but i refuse to let her spend the last few months,years around strangers. she really only knows or remembers a few people. she also goes to a adult daycare 4 days a week for 6 hours a day wheich she loves. she calls it school. but in short you do what you feel is right by your mom and what is in your heart. dont listen to others that have never been there or done that.

Phew.

I respect your refusal to hold on to the hurt, Pandoralou. Forgiving is different from forgetting; I was afraid you might have forgotten, for a moment. Good for you, you are in the right, and I hope your mother continues to do well in her NH. Best of luck x

Take in the whole picture, Pandoralou, she is happy where she is and cooperative. Taking her back in with you will undo all that. She will revert to the narcissistic, manipulative person she was before. In her present setting she has learned that good behavior brings positive interaction. The bait is very sweet, don't take it. She is happy. You are happy. Leave it that way.

Yes, you are all right. She is better where she is. But believe me, Shakingoffdust, no one is going to benefit financially from my mother. She is one broke woman. And no, one does not forget decades of abuse, but my goal was to forgive and I have done that.
She is starting to have trouble swallowing and when I really think long and hard about this, she will need skilled nursing care more in the future. She is not physically ill, except for dementia, but that will start to cause more physical problems for her. So I will keep her where she is, visit often, keep my eye on her care, see if her aids were insured, communicate with the staff and try to let my mother know that I love her in spite of it all. It is not about what kind of person she was. It is about what kind of person I want to be.

Pandora, obviously you are a kind and loving daughter. My siblings and I had the same situation. When mom was 92, we moved her from her house to senior living thinking she could live out the time she had left with comfort, friends, mental stimulation and less responsibilities. She had no meds, no physical problems, was fairly mentally sharp - we never thought she would live so long, its been 8 years. At 92, she was slipping and not taking care of herself, but over the years she had increasing dementia. She is still physically healthy, but mentally, - we could never live with her, she is not an easy person to be around for more than a few hours.. Consider carefully whether you are up to taking care of the physical and emotional problems that progress as old age kicks in. Know that although your mom is healthy now, she may be with you for many years, and her mind and body will deteriorate quickly in her 90's. My sibling and I could have managed her at home years ago, but now, we are older with our own health problems and we are glad we moved her when we did. She has friends and is happy there. If you bring your mother home and problems arise, you might have to move her back to a nursing home. Would it upset her? Is it possible for you to find a better home? If you choose to bring her home, just do it with the understanding that many things happen as a person ages.

SDS, reminds me of another issue that needs to be considered. What if you take her out, she is self pay now, will she pay you now instead? If so, make sure there is a care agreement in place before you receive a dime. When the money runs out, then in theory Medicaid will kick in. What if you realize that you just cannot do this? You will try to get mom accepted in a nursing home, mom is out of money, will need to go into care on Medicaid which is very difficult to do. Most facilities require a period of private/self pay before they will assist with Medicaid applications.

Pandora, do not make this decision based on a lost hearing aid. Did you realize when new hearing aids are purchased there is insurance included with them that covers loss? In my mom's case she can have each one replaced once in the first two years.

It is so wonderful that Mom has changed for the better. Awesome. It may or may not be permanent. Dementia is a highly changing disease. Enjoy this new opportunity for a close relationship. Cherish this unexpected gift. And don't risk ruining it. Keep her where she is. Visit her often. Bring her to your house for holidays and an occasional weekend.

Don't move her in with you.