Should we not see my mother anymore?

23 answers | Last updated: Oct 27, 2016
Frustratedannie asked...

My mother has Dementia, is restricted to a wheel chair, and as I am not able to take care of her had to put her in a care home. She has been there over a year, and I try to visit as much as I can, then I went through a job and car loss on top of taking care of my four year old son.

The case management company is now telling me that they 'highly suggest' that I don't go to visit her at all or call to speak to her. They said to just speak to the caregiver and check up. My mom is 87 and I know that she wants to see me and her grandsons. They say that she has a change in behavior and that the caregiver may not want to take care of her anymore as she is very difficult when that happens. They said I could go visit or try to talk to her if I want, but then I might have to start the whole long process again. I wish I could take her, but I can't help thinking that this is just not right... ethically. They say that I have to think about her and the caregiver, would I want to hurt my boys if staying away was better for them?

Is this normal for the caregiver to ask the family NOT to visit?
~Frustrated Annie


Expert Answers

Kay Paggi, GCM, LPC, CGC, MA, is in private practice as a geriatric care manager and is on the advisory board for the Emeritus Program at Richland College. She has worked with seniors for nearly 20 years as a licensed professional counselor, certified gerontological counselor, and certified geriatric care manager.

I would be highly suspicious of a caregiver asking family members not to visit. You said that your mother is in a 'care home', by that, do you mean a small residential facility? And you also refer to a case management company and a caregiver.

My assumption is that your mother lives in a small home, managed by a care management company who has assigned a specific caregiver to your mother. Operating on these assumptions, perhaps your mother has bonded with the person she sees most often, the caregiver, and perhaps the new relationship is weakened when your mother sees you.

That is a small price for the caregiver to pay. Your mother has known you all of your life, and much of hers. It is irreplaceable in both of your lives, and should be preserved as long as it has meaning for either of you.

My recommendation for adults visiting parents with dementia is that you visit as often as YOU want to. Do not visit out of obligation or because you feel you SHOULD. Visit because you want to see your parent, because you feel good about visiting. Stay only a short period of time because their attention span is shortened by the disease. Always bring a project with you, something that can be enjoyed by both of you. Leave when that project is completed.

The project can be photos of earlier times in your parent's life, or a magazine such as Reminisce (http://www.reminisce.com), or beads to string, or coupons to be cut from the paper, or whatever has been a source of pleasure to you and your parent in the past.

In this way, you will maintain the relationship with your parent without disrupting their daily schedule too much. You will add quality time to the memories you have of your parent, and a pleasant 'moment' to your parent. I highly recommend the book, Creating Moments of Joy by Jolene Brackey, http://www.enhancedmoments.com.


Community Answers

Grannyb answered...

Please, please take the expert's advice above! There is something not right about the request from the case management co.! I would check out the company for past history with other clients and make sure your mom is getting meds and the care she needs and deserves. I don't know where you live so am unable to suggest whom you should talk to but there is surely a state agency that will assist you. God Bless you and please don't stop seeing your mom as you want!


Nursedementia answered...

I would never allow anyone to tell me not to see my mother. My mother does have Alzheimers, and family is very important, not only for her but for me (yourself). We are to be there for the patient/resident not ourselves. I am a dementia practitioner as well as a family member. It sounds like its a "convenience" thing for staff. Well, thats just tough. You keep visiting. Children and animals are great.


Howcoolrutoday answered...

Without question you are faced with a difficult situation. Do not take the word of any caregiver as a representation of fact! It sounds like you are your mother's ONLY advocate and tough as it may be, you need to do whatever you can to protect her. My experience is similar only I have an abusive and combative father w/dementia (going thru guardianship) AND a stroke ridden, wheelchair bound mother w/mild dementia (secured power of attorney) - each is in a different facility. Job loss also played into my scenario along with 2 teenage children to raise. Take heart "“ you are not alone "“ this is painful. These care-giving "facilities" need to know AND see that you are there to enforce your mother's rights, ensure she gets the best care possible, and do what is necessary to make life as pleasant as possible for her. Depending on your proximity to the facility, I would suggest to at least be visible and known to the administrators and all who care for your mother. Remember "the squeaky wheel gets the oil" and if your mother has no one to go to bat for her, she inevitably WILL BE NEGLECTED AND/OR EXPLOITED; intentionally or not. Personally, I go at night mostly with intermittent stops in the day. It the logistics are not possible, see if you can find someone YOU trust (friend, relative, social agency) to stop by periodically in your absence "“ just so they (e.g. "the facility") know someone is watching out for your mother and they will be held accountable. What you do now will stay with you for the rest of your life - for your mother's sake, do the best you can and don't give up!


Brendalee answered...

Hi Frustrated Annie, I am 57 & my mother is 88 & I had to enter her into a nursing home 2 years ago with dementia. It has since escalated significantly. We live 380 miles apart so I call every week & speak with her. Sometimes we have crazy conversations, sometimes more 'normal', but I understand what is going on in her brain, so it helps me to be more accepting rather than upset. There is NO way anyone would keep me from seeing her face to face when I wanted to. As other people have answered you here, I am in total agreement, something is very amiss for you to be told you shouldnt visit. WHY NOT? I've always had an excellent relationship with my mother & I know her life is winding down. I would kick myself a thousand times if I sucumbed to not seeing her because of someone telling me they 'highly suggest' that I dont. How ridiculous! No one loves my mother like I do & no one would ever stop ME. God bless you in your decisions. BrendaLee


Beatbreastcancer answered...

Frustrated Annie, listen to everyone and your own gut instincts! DEFINITELY check this place out; something doesn't smell right here to me. As for not going, who are THEY to tell you how to love your mother?? Do THEY really think your boys will be hurt by seeing their grandmother?? Sounds to me as if they just want to make things as easy as possible for themselves, and they don't give a giant flying hoptoad about your mother's emotional welfare, OR yours. Keep an eye on this place, and love your family all together. Everyone has had excellent advice for you, so listen to them. Sorry, this situation has really got me het up!!! God bless you, your mother and your boys; please write us back and let us know how things are going. We're here for you.


A fellow caregiver answered...

Find another nursing home even if it is further away from your home. These people are lazy and incompetent and simply don't want to be bothered There are better places out there look for one.


Tigerlori79 answered...

I agree with everyone elses answer. I am in a simular situation, my mother has moderate alzheimer's, I lost my job 1 1/2 years ago, and my father is not able to care for her. I have looked into Assisted Living and group homes, I definitely prefer the assisted living. I did however discover that Arizona and some other states will allow family members become paid caregivers. I am in the process of setting this up. It is a win win situation, I will make enough to keep my home and car, and I get to spend alot of time with my mom. My dad will come 2 days a week to give me a break. Do NOT let anyone tell you you can not speak or see your mother EVER! God Bless you and your family.


Johnc answered...

This would be a big red flag for me. The first thing I would do is visit immediately and to a visual inspection of my mother for signs of physical abuse. I would also do a current search to see of any of the people (the facility, case management company or caregiver) are involved have any past or pending legal issues. I would, without any other reason than the recommendation of the case management company, look for a different case management company. If these type companies or caregivers are regulated and or licensed in your state I would contact the state and ask about this. Who in the heck do these people think they are. This is wrong , wrong, WRONG. I would also contact my local State Representative and Senator and let them know this is going on if only to make them aware of it. They are there to serve and I have used the ones in my state more than a few times for many issues. People often don't think of them when a problem arises. They often have insight and solutions at their finger tips it would take you forever to deal with.


Gerij9 answered...

For the last 5 years I have done marketing and case publicity for one of the leading elder abuse and nursing home neglect attorneys on the West Coast.

He is always telling families that your loved one in a nursing home or long-term care facility absolutely needs you to be their advocate.

You need to drop in any time of day or night to visit and to see what's really happening. A good home will have no problem with your presence.

When you are there, use your 5 senses to check out what's going on. Make sure there are no unexplained bruises, lacerations, or pinch marks anywhere on your loved one.

Make sure there are no bloody clothes or sheets.

You should be allowed to check the your loved one's chart. Is she dehydrated? Lost weight? Does she have pressure sores?

There's so much more. Believe the expert above. Personally, I would urge you to change nursing homes, as difficult as that is.

Some of the cases I've worked on on behalf of the attorney I work for could curl your hair with horror. So often families couldn't have stopped it, but the involved family has a better chance of protecting their loved one than the families that don't visit.

Best to you. geri wilson


Tea mcalpin answered...

Annie, I am a long-term caregiver of better than 30 years. Only one time in my long career have I ever requested a child not visit a parent. The daughter, aged 62 and a retired first grade teacher, would get nose to nose with her mother and scream at her as if she were deaf. If the mother did not parrot everything the daughter said, the daughter would get louder and scream the mother was going to die if the words were not repeated. This daughter mistakenly believed if her mother repeated the words, she agreed to them and all would be well. If she did not parrot/agree on the second try, the daughter would wail like a cut ape at the top of her lungs! Her screaming disrupted meetings on other wings she was so loud. Another patient was so startled once, she fell trying to stay upright with a walker. No broken bones thank goodness! Her mother would refuse to eat, drink, or speak for 2 ½ days after each visit from the anger, she felt. Under normal circumstances, no one is asked to stay away. Visits are a happy part of each patient's day or week and encouraged. If you are not part of the problem, then you have a problem on your hands. However, please take a realistic personal inventory and make sure you are not the problem. It is very rare that anyone is asked not to visit unless they risk upsetting patients or are abusive to staff.


Frustratedannie answered...

Thank you all for your help! When my mom got her dementia, I tried to get my older brother who lives in another state (I'm in Hawaii) to help me as he is the oldest, has no young children, is an attorney, but has not a clue. Over the years I've tried to let him know that we would one day need to deal with this and to start preparing for it. I am a parent of 2 children with a spouse who is not the most supportive person in the world. My mother only qualifies for partial medicaid and I only had 1 month to get her into a new home. I had to move her with all the money I had left to pay for movers,etc. and had to resort to the wife of my spouse's co-worker who is the admin person for this particular case management. Yes, I know... conflict of interest.. but it was all I had at the time. I am moved by such wonderful advice and the feelings you all have put into this. They don't teach us this in schools, so I had not a clue about any of it. Bless you all! ~Frustrated-But-Better-Annie


Tigerlori79 answered...

Hi Frustrated Annie...I know how difficult it is working with Medicade. In order to be eligible your mom can only have so much money/income. Make sure you check out www.eldercarehawaii.com. They may have more answers for you or may be able to direct you to who can help you. Good Luck


Gerij9 answered...

Frustrated Annie and anyone else who is interested. . .Be very careful about the Medicaid issue.

More and more nursing homes and long-term care facilities are evicting (!) residents once their Medicaid runs out.

Before you place your family member in a nursing home or long-term care facility, ask them what will happen when your loved ones Medicaid runs out. Ask them if they will make your loved one leave the facility.

If they say "no," they will not evict or ask them to leave, get it in writing!!!!! At least then you'll have some legal ground to fight them with.

geri wilson


Wrs answered...

Annie it's not just a red flag. The dam flag is on fire I can feel the burn of it myself. Get there yesterday to check on your mom. My mom has been in a rehab center or hospital for the last 1/2 year now, if any one of them had told me that I'd be moving in until I can get my mother home. Ask yourself if your mom was a toddler child of yours would you accept that? My mom is very much like a toddler who is adorable until she has her melt downs. But she very much needs my love, companionship, touch and most of all protection. I hope with all my being and concern for her and you that your mom has not been miss treated either physically and or mentally. Our loved ones often can't speak complete thoughts or tell us what is really going on. I listen to every thing my mother says, if anything remotely doesn't look or sound right I start asking questions. I bring up the fact the my toes are folded back in her shoes or her teeth and nails are not clean. I want them to know that I will do anything I can to help them care for my mom. And I'm aware of what and how she is being cared for. I'll be the first to apologize if I have over stepped on a care professional and to say thank you and mean it in every bit of help the give me and my mom. This is to me much better than haveing my mom mistreated or be to stepping over my mothers grave any earlier than needed. Now you might ask why feel so passionate about this. My dad who had dementia died of scabies and dehydration because I couldn't watch him as closely as needed. I couldn't get to him as I was caring for my mother at home. My dad was doing just fine the day before the Nursing home doped him up because he started yelling for help to scratch his back. From that day forward when I would visit and I could not wake him. I complained every time I would visit. The answer was always O he wakes up later on in the day. I couldn't get there in the afternoon. They sent my dad to the ER when he started to urinate blood. It was down hill from there and I had to take him off life support. It all happened in a very short amount of time.

Sorry for being so forward but your mom needs you. Even if she doesn't know who you are and yells her socks off at you. You are her only, at the very least, protector

WRS


Frustratedannie answered...

Update from Frustrated Annie 05/06/10:

Again, thanks to all of you for your words of encouragement and support. I did go to see my mom... and was very unhappy with the way she was being treated. The caregiver was just giving her breakfast, and shoving.. yes.. shoving the food into my mom's mouth really hard. I asked her why she was doing it, and she said because if she doesn't, then my mom won't open her mouth. My mom was so happy to see me, and I could tell my unannounced visit was not pleasant to the caregiver. I took my mom out for a while and while she can't say much anymore, she does look at me when I ask her how she's doing and feeling with the look that only I know...the one where she is grinning and bearing it, because she is telling me without sound, that she hates it there. I have brought up the issue to the case management co, that I found a potential nursing home that would be contacting them to get an assessment about my mom over the phone before they sent someone out to check out my mom's condition. Keep in mind, there is a balance that we still owe, but they had agreed that I could pay it as I could. I lost my babysitter and thus job, so have been incomeless. My spouse now pays for the rent and all bills and food for us and the kids. There is nothing extra until I get back to work after my youngest son can start kindergarten. However, they told me that we could move my mom when the time was right even though I had a balance. Now, they are telling the other facility that my mother is a 'high-risk wanderer' so she is not eligible to get into the other place. My mother's regular medicaid and medicare and soc secy check are basically paying for this woman's mortgage and bills. I don't know how they can say my mom is a wanderer... let alone a high-risk wanderer, when she can't even standup by herself or walk without assistance from a person. She is too weak to use a walker and is very fragile. So now, it's almost as if they are keeping her hostage by not giving me the proper assessment. I am now speaking with her dr and nurse practioner who both agree that I need to move my mother from there and they will be happy to help me do that.

Thank you all again for listening and helping me out! Aloha!


Church lady answered...

Something is not right here. That is YOUR mother and there shouldn't be any reason for you to not see her. When my own mom was in a nursing home a caregiver told her the only reason she was in there was because she was an awful person and the family wanted to get rid of her. When I found out what happened I had an investigation done and the caregiver was removed from her floor. There were other incidents too. You just have to stay on top of things and be a mentor for your mom no matter what anyone says. I wish you the best and will pray for you. I've been there and now am caring for my father-in-law, still at home so I kind of understand the stress you're going through.


Pippy answered...

I feel for you Annie. My mother had dementia 10yrs ago and died 3yrs ago, but when she first went into a home it was said for 'respite' and assessment. The social worker met us at the home but we were not allowed to accompany my mum into the home, and was told by the social worker that we were not allowed to visit her for 3days! we were allowed to phone to ask about her but not speak to her! This broke mine and my dads heart, and rang the home every 3hours! at 10pm I was making the last call of the night, only to be told briefly that she was in the local A & E hospital! we were told there was no need to go to the hospital as she wouldnt be long, she had fallen and cut her hand. We went immediately! only to find her with no glasses, slippers,dressing gown, and the drs were not going to discharge her until we said we were taking her back home with us. She had stitches in her hand, and discharged. my husband went to the home for her things, only to be given her tablet pot! in there were the reason for her falls, of which we were told she had fallen 4times that day..only day she was there! Medication to calm her down had been doubled! I had the fear of my mother thinkng we had left her and that just wasnt true. This apparently happened to everyone I met who was under this particular social worker. Others had never heard of it!!! so please, stick up for yourself and your mum, I did after that. Good luck hun, your mum loves you as you love her. My mum went into hospital 2 weeks after that episode and stayed til she died 7yrs later.We were never discouraged from visiting, I was even allowed to stay the night when she was dying. Do what your heart tells you xxx By the way, i am now in a near position yet again, as my dad has now been diagnosed with Alzheimers:(


Tea mcalpin answered...

That classification is pinned on people to keep other agencies from accepting them.Taking a fall risk patient is asking for trouble and insurance coverage goes up as per the assessment. Demand an assessment with you present. Several homes here are using that tactic to keep patients in house if families try to move them. Once they have you convinced you can go no other place...they really put the financial screws to you. In the long run it is all about the all mighty buck! Empty beds make bad looking paper for administrators.


A fellow caregiver answered...

I work in a Skilled Nursing Facility as an Activities Director. I have never told a family member NOT to visit. I will say this, though. There are some very confused Residents who do not tolerate family visits very well, no matter how loved, supported or well intentioned. Many times after family leaves a Resident can become very agitated with increased anxiety and confusion. Even during the visit, family observe increased sadness, anger and frustration with their loved one. They assume that this is how their Mother or Father behave all the time. Here is an anology: When my youngest daughter was in Nursury School, she cried everyday when I dropped her off and cried when I picked her up. After many times going through this I called the teacher and said, "This school thing may not be right for her now". The teacher explained to me that she was doing just fine, adjusting, playing with peers...etc etc". Many times I find myself saying to family, your mom is doing fine. They find it hard to believe me. Sometimes, it is due to the fact that caregivers accept a loved one for who they are now. Family have difficulty navigating around the dementia. The dust of some family emotional histories fly up and can confuse the Resident. This frustrates the family. This frustrates the Resident. The caregiver is left to sooth, redirect, diffuse and distract an agitated Resident long after family have left. Sometimes this can be very difficult. I never judge family who are not frequent visitors for this reason.


Caring community answered...

Thank you everyone for taking the time to respond to FrustratedAnnie's question, "Should we not see my mother anymore? Is this normal for the caregiver to ask the family NOT to visit?". We appreciate the outpouring of support that was shared here.

However, we also removed some of the posts which included content that didn't meet our Community Code of Conduct (https://www.caring.com/about/community_guidelines), didn't focus on answering FrustratedAnnie's question, and consisted of debating institutional/facility care. Differences of opinion are welcome on Caring.com, as long as they're presented respectfully and are pertinent to the caregiver question or concern that was originally posted. If you'd like to continue the debate that was previously started here and now removed (revising the tone and content of the posts to fit within the Community Code of Conduct), please instead visit our Discussion Forums: https://www.caring.com/forums

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Thank you!


Amber cna answered...

I am a CNA and I will say that after a family visit some residents with dementia (actually it can be any resident) get extremely agitated when the family leaves. They can also wander at night to look for them. Sometimes it brings about anger that they were placed there in the first place, even if they clearly need the help. HOWEVER, never under any circumstances would I tell a family member NOT to come. We are trained to deal with these behaviors and it's part of our job to help your family cope. How dare they tell you not to come. I personally would remove my family member immediately and report the facility.


Cmlandau answered...

When my husband was in a rehab center that was really only a nursing home, I felt compelled to writeup and distribute a sad memo that requested staff or I be present if one of his sons showed up to visit him. His first and second sons stole his home, then his money. There are two paths to law - civil and criminal and they do not intersect well. I am unwilling to 'arrest' a family member, even if it is not my own child. I had a dream of this son laying across Mary's lap like the sculpture the Pieta. I wondered if this was the son's deceased Mother reaching out to me to not arrest her son. Well, it only got worse. By not going the criminal route, the civil courts are a mess. They assigned a temporary plenary guardian, what? Even my attorney friends said, what? Now I'm finding myself having to fight two fronts, the greedy kids and the family courts bureaucracy that invade our lives with incorrect judgement. What is put upon us is life long consequences not based on reality or truth. This system is too removed to really know what's going on. Watch out for potential legal issues, as there is a huge market for attorneys to make money on the complex and confusing sets of laws that are only getting more intrusive into our personal lives. Here is a situation where the elder person would be better off not having family members visit. I tried for a long time, nearly a decade to 'heal' this family; sometimes families just need time and space crossing lifetimes...to work out their issues.