Is it good to limit visiting of a dementia patient?

18 answers | Last updated: Nov 06, 2016
Surfergirl asked...

We are caring for my mother-in-law who has dementia of some sort. What is your advice about people coming to visit our small house? I'm concerned that too much company, especially young children, makes her agitated. We have a lot of in-laws and grandkids that think it's wrong for us to limit the company. Our job is hard enough without all the company. They all want to visit but no one wants to help.


Expert Answers

Maria Basso Lipani writes a popular website on geriatric care topics, where she puts her expertise as a Licensed Clinical Social Worker to good use answering care planning questions. Maria is a graduate of Columbia University School of Social Work and is licensed in California and New York.

Listen to your gut because you are exactly right. Crowds and noise often bring about agitation for a person with dementia, not to mention stress for you when you add "hostess" and "host" to the list of hats you and your husband wear on a regular basis.

It’s wonderful that so many family members want to visit your mother-in-law, and these connections are important to maintain for as long as possible.  But, it’s best if the number of visitors are limited to one or two at any one time.  Any more than that and it's not enjoyable for your mother-in-law; even worse, it's upsetting.

One more thing. The next time cousin Jane calls to say that she’d love to visit your mother-in-law, tell her that you think that would be wonderful. Then ask her if that visit could include a trip to the grocery store or the doctor’s office, etc. This may not work, but you have a much better shot of engaging other family members in the nitty-gritty work of caregiving if you ask for help with something very specific.  If cousin Jane is unwilling  then at the very least, use the time she’s there to go in another room and put your feet up for a few minutes...better yet, get out of the house yourself.
 


Community Answers

A fellow caregiver answered...

Sorry that the rest of the family isn't more supportive of all the work you are doing. It might be helpful if the suggestion to limit visitation came from your Mom's doctor or other professional person involved in her care - so you don't seem like the 'bad guy' to the rest of the family. But you have every right to limit visits to what Mom, and what you and your family, can realistically cope with. Asking for specific help, even at specific times, is a great idea. Would some of the family commit to covering a regular set time so that you can get out? I know my Mom does better with predictable regular routines.


A fellow caregiver answered...

This may not answer your question, but my sisters and I work well together and were able to keep mom and dad in their home where they passed peacefully. We were fortunate that our parents had a primary care provider who specialized in "geriatric care". By working with this physician, we were able to access other doctors in areas of specialized care such as geriatric psychiatric care. We would meet at various time intervals along with mom and discuss what was taking place, how mom felt about her situation, and how to work through it. As time passed, we were provided with information at various stages of her illness which lasted 4 yrs. We also received a book that they recommended we read entitled, "The 365 Day". Between the doctors, mom's participation (as long as she could), and various resources we managed very well. We also found out that by working through geriatric care, insurance as well as medicare covered a good portion of the cost; especially visiting nurses and occupational therapy. Dementia is difficult on any family but it can be managed; not cured. Because of the training, support and compassion we were shown by the various doctors and resource personnel, we could explain to our families what happened and why we requested certain things that they not do or do.

In March my husband and I began the care of his parents. My father-in-law in early stage of Parkinson's dementia. Our adult children and grandchildren who visit frequently know what to expect and what they can do if they chose to help out.


Magintob answered...

My experience with my Mother's moderate stage alzheimers is quite the opposite. We are a big family, she herself is from a large family - she loves it when her children visit (and we do so every day, sometimes four or more of us at the same time) and they can bring their children too.
She loves to hug them, she enjoys listening to us talk and laughing, re-telling old family stories, hearing (though NOT remembering :) what is going on in all their lives.
She is in in elder care home with other alzheimic residents - they don't get the daily visits like my Mother does - and I see them dwindling into silence right before my eyes. It is sad to see. So I personally do not agree with limiting visits - I do agree that young children must understand it's not like going to the park and running around!


Surfergirl answered...

If our mother were in a home as yours.. I would say company is fine.. but we are providing all her care.. no med,s to calm her... we have to get her up when she doesn't want to every 2 hours. she weighs 200 lb so that alone is hard. Comany seems to makes her try to assert her authority and then she becoomes totally unreasonable.She doesn't like music or active children. We often keep our friends dog which seems to calm her... people not so much.. she is suspicious of anyone in the house other then us,because she forgets within seconds who they are. She thinks they are stealing things from the fridg. etc.. She likes calm around her. She was always a very private person and enjoyed reading and writing in her journal.

Thanks so much for your response and wish you the best with your mother. surfergirl


A fellow caregiver answered...

Everyone's situation is different. I found that my mother was overwhelmed with outside visitors. She tended to be afraid they were stealing or after her belongings. She always chose to be alone and dealt with life on her own terms. So, when she could no longer deal with everyday chores or hygiene, she was overwhelmed. It was very difficult to care for her and I was relieved when help was finally available but only after a severe mental episode. There are many organizations that can help with elder care questions and direct you in the right direction. A good doctor is essential. Please do not let others (family or not) make you feel guilty.


Lindasd answered...

My mom is Stage 2 and I have lived with her for 10 years. We have a routine and she knows me. When my brother and his wife came during the holidays mom was extremely confused. There was too much change from the routine. There was a lot more noise, more movement, clothes and things all over, change in meals....The day they left she was back to normal. My brother kept saying how bad she was. She's only "that bad" when he was here.

If we have a neighbor visit, she seems fine. It's one person who is sitting and calmly chatting.

My father was in a nursing home with his Alzheimer's end stage and was always confused by the other patients and activity. He was more normal and calm if we took him to a place where there was quiet and just the three of us during visits.

I personally would do whatever it took to keep your care of her easier yet still give her time around people. Maybe explain and ask that only the adults come and only one at a time or one adult and one child at a time. It is hard with family that care but don't understand the disease.

Good Luck.


Beatbreastcancer answered...

You said she has "...dementia of some kind." Has she had a specific diagnosis, or are you going by her behavior? Maybe if she had (if she doesn't have) a diagnosis stated and confirmed by a doctor, the rest of the family would sit up and take notice. Then again, you never know; some people prefer to ignore what impinges on their comfort. Hope things improve, family-wise; God bless you both and give you strength.


Kachina answered...

I am caregiver to my husband who has Lewy Body Dementia. I am so in need of some respite time, I would be thrilled to have company come visit my husband but my family lives far away. If company wanted to visit, I would take that time as respite and get out of the house for a while which would help alleviate the feelings I have of being imprisioned in my own home. I think it is important for our loved ones to have others come visit. The person visiting is coming out of love and they don't expect or want you to cater to them. No matter how much you have considered yourself a good hostess, you have to let that go and just let the visit be. I was always a great hostess but now when anyone comes to visit, I tell them to help themselves because I don't have the energy to entertain them. Use your family members to help out with some duties while visiting. Get them to bring over a dinner or do some laundry for you, etc to give you a break. Bottom line, I would never stop anyone from visiting my husband unless they became a problem. Good luck. You have a difficult job ahead and I empathize with you dilemna.


Surfergirl answered...

I'm sorry that your family lives far away. That does make it hard.My husbands sister live far as well. We are lucky that my mom lives next door and is going strong at 82. She can watch my mother-in-law a few hours so we can go bike riding together. She doesn't remember her but they are close to the same age and can chat.

I don't mind people coming just not in big bunches.Which is what they want to do. One or two poeple at a time.mostly his children and grandchildren.

My mother -in-law also is developing some odd eat habits that we nor her want people to see... especilly great grand kids.I don't want them to remember her playing with her teeth or spitting food on the floor. We have to perserve her dignity. Woulds she like to have her family see that? If it was me no! Thanks for your response. surfergirl


Lms answered...

I'm dealing with "dementia of some kind" with my mom as well so I sympathize. We are trying to get a diagnosis but it is a slow process when the patient is as uncooperative and medically non-compliant as my mom is! As far as visitors - if they upset her - I say LIMIT THEM! My mom is the same way but I think hers is more because she can't remember who these people are or their names and doesn't want to admit that to anyone. So she gets mean and "wants to be alone". She still lives by herself - even though she is falling frequently and unable to take care of her daily needs - because we have no power to force help on her without the diagnosis. So my advice is to make your mom-in-law happy and then your job will be easier. Trying to trick those non-helpful relatives into helping is also a BRILLIANT suggestion!

Take care and stay sane -

Lori


4manor answered...

As a retired Case Manager, I would call a case Conferance @ a netural setting. I would have alist of the needs of their Parent.

Each adult child would check the need of what they could commit to; If they were not able to come, it was their responsibility to call another Sibling to trade time. This worked very well.

The list would be taped to the Frig,

One Client had five Children, which included one Daughter and four Sons. The Sons lived up to 80 Miles away. I had my Staff Aides who staffed the week day, but not week ends. The Parent was happy with the plan in that she had a good visit with each of her children every month.

We provided a Journal, and each Family Vistor & Aide would have an update of the service plan changes etc.


A fellow caregiver answered...

This whole situation of watching someone you love deteriorate right in front of your eyes is bad enough without more people getting involved. Visitors in and out is just more for you to deal with while everyone goes home and sleeps good. This is the most inhumane illness I think I have seen. Depending on her stage, 9 out of 10 she is not going to know them, or if she does, she won't remember tomorrow. Tell the visitors to do some research on this plague and maybe they can realize they should have came by and told her they loved her before it got out of control, if it is out of control, and if not get ready it's coming. Just don't stop loving her and don't get mad because it is not her fault.


Surfergirl answered...

Thank You! She really doesn't have stages. I think she has vascular dementia caused from small stroke. So far, they have been small but Doctors say antime she could have a a major one. Yes, It's hard to watch your mother slowly lose more and more memory. All we can do is make her as happy, secure and keep her as comfortable as we can. Give her the dignity she deseves. She Just turned 90 the end of January.. Hopefully she will have many more.

Surfergirl


Ca-claire answered...

Hi surfergirl! How wonderful that you have your Mother in your home! Especially since you describe your home as small. You have special blessings coming your way by being so caring!

I would suggest that the first thing you remember is: IT'S YOUR HOME! When people call and want to come visit - ask how many will be coming. If you feel that the number is too large, ask if fewer people could come. It really gets confusing to elders with dementia of any sort to try to keep track of who's there and who is who. I notice in my family, if there is more than one of us, Dad just sits there and listens to us talk to each other with very little input into the conversation.

Of course, if you want people to learn what it is like to take care of an elder with dementia, when they come over, let them know you will be back in 2 hours, leave them a list and have a cell phone with you to answer questions, but you will not return for the 2 hours. They may not do things the way that you do, but they will get a taste of what it's like to work with someone with dementia.

Its difficult being the caregiver, and unfortunately, the thank yous come much later. Love your Mother while you can, and love your family members that want to see her too.


Mrswhit59 answered...

Hi Surfergirl, I too, am a full time caregiver. I am the 7th child out of a family of 8 children. Mom has end stage Alzheimer's and Dad has asbestosis, emphysema and mesothelioma. Dad now has a mass on his right lung the dr. thinks is cancer. I had to separate my parents after they had been married 56 years. My Mom could not bathe herself/or go to the bathroom or even "find food" to eat from the refrigerator. Mom now lives 3 miles away in a nursing home in a private room (we are helping pay for) while Dad now lives with my Husband and I. I had to sell their home, physically move them and receive nothing but criticism for the decisions that had to be made. The past four years I was spending 3-4 days a week over there making food, filling pill boxes and transporting to drs appts. I have had NO help from my siblings. It is very tiring to be "responsible for your parents 24/7". So I am going to tell you that "family members" only think of themselves when they request large group visitation with confused parents...if they had been around they would know that large loud groups of people upset and confuse patients with memory issues. Short quiet visits in a controlled setting are what Mom and Dad need. We are working the hardest job known to man...watching our parents age and eventually die. The reward is in heaven for sure. My greatest hope is that my own children see how hard I am working to care and support my parents to the bitter end. Family members standing on the outside are quick to condemn, but we must press on. My Mom recognizes only three of us now...Dad, Me and My Husband. The extended family becomes upset when Mom does not know who they are on their once every 3 month visits. We can have peace knowing that we have done all that we could do. Please do not grow weary doing good. You are not alone in your struggles.


Surfergirl answered...

Thanks so much. For sure care giving is a hard job. I know we are doing the right thing and our conscience is clear. Your siblings will have to live with the fact they didn't help.

My husbands sister lives in the midwest.. But she was afraid to fly so she never came except 9 year ago she was going to come but canceled at the last moment... They wanted to visit but not do any of the care part.. Now... my sister-in law had a massive stroke last year and is in a hospital and I don't think she will ever get out of there. I finally gave up wanting anyones help. She has to live with what she did and now her husband has to go to the hospital everyday and make sure they are taking good care of her. I have a hired a caregiver that comes over and gets mother -in-law up in the morning, give her a bath and wash her hair 3x a week. It's costly but really helps me so I can do other things My mother-in-law is now 92 and will be 93 at the end of the month. She is healthy other then the stroke and takes no medications.

My husband has children but I don't think it's their responsibility to take care of their grandmother. They have their family and work. Plus I want them to remenber their grandmother as she was not how she is today. No one know what we go through until they have to do it themselves Hang in there and know your an angel for what you are doing. Best wish to you...


A fellow caregiver answered...

This too is a big problem for me and caring for my mom. Her sons rarely visit but when they do it is just too overwhelming for her and they don't see it or get it... Her hand movement and then she begins to tremble. Her eye movement. They don't see any of it. And in my mom's case, when they call they talk to her just as they always have... Complaining about their jobs and their stress and their retirement funds. And most of the time she doesn't even know who she talked to after the call, much less remembers any details which only adds to her frustration and agitation. I finally gave up trying to explain as it only caused arguments and additional stress for me. Unfortunately mom has to be the one to suffer the most due to their ignorance and lack of educating themselves about her disease. It's very sad.