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My mom has been in the dementia unit of a nursing home for about a year and a half (feels like longer). I've had a hard time with administration and staff. (Anyone with a parent in a nursing home knows exactly what that means.) I often feel that I hate that place because of the way I've been treated, but it's the best one I could get my mother into, she's content there, and a move would mean she loses her private room and everything she's familiar with...not a good thing at her age. With time, as expected, I've seen my mother's condition get worse. She's in diapers now and unable to speak coherently. It kills me slowly to see her like that, though I love her more than anything. Sometimes it's a struggle for me to go visit her. My visits have been reduced to 2x per week for about 3 hours a visit, sometime more.

I feel guilty and angry at myself for not having the strength, or I guess the willingness to visit her more often during what is likely the last stage of her life. I long for this time of life to be over, but that would mean that I lose my mother too.

Most of the people on my mother's floor NEVER get a visitor. I'm curious about how often other people fight through the heartbreak and go visit their parent with dementia in a nursing home.

(Just to provide more detail, I pay a nursing student to visit her 3x a week for 3 hours a visit, and my husband will go visit her separately once or twice a week so she gets more coverage.)

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My mother is in a nursing home and has dementia. She is not in secure "memory care" wing.

I visit my Mom once a week, anywhere from 1 to 3 hours -- seldom more. My three sisters each also visit once a week. One brother visits weekly when his unstable health permits. Mom has more visits than the majority of residents (with or without dementia). Mom still knows all of us. She enjoys our visits, but she does not remember them.
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It sure sounds like you are doing a lot to ensure your mother is well cared for. I think the time you stay and number of visits is a personal thing. If you have trouble with the regular schedule then lay off for awhile. I wouldn't push myself if it's too much and was bothering me. It is very difficult to see that kind of decline. I know it is with my cousin. I can't imagine how it would be if it were my mother. Why not adjust your visitng schedule and see how that works.

I find that my cousin, who has severe dementia in a Memory Care facility, loves to see me when I arrive. She lights up, smiles, hugs me, etc. We sit and visit and she enjoys her treats that I bring. Conversations aren't really possible anymore, though I ask her questions and she will give a yes or answer. She will occasionally make a comment that makes no sense. I listen though and give her lots of attention, put her favorite lotion or body spray on her, comb her hair, put on a new top, play her music, etc. I'll inspect her closet and drawers, refresh decor in room, etc. However, after about 30 minutes, she will lose interest and wheel herself down the hall. It's like I'm not there anymore. She will actually wheel into the hall like I'm not there. I take that as her level of focus is full. So, that's when I give a loving goodbye and leave. I visit weekly and call once a week to speak with her directly and the director about her status and any changes. She is in a different city and I think my schedule works for us.

The facility has a few volunteers that go twice a week and visit every resident. I think that is great, though, some of them have no memory of it. They do enjoy it in the moment though and that's what is important.
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Thanks to you both for responding. I do have trouble with the regular schedule. It is bothering me. I dread going, and as I drive up to the nursing home, my stomach goes into a knot, my heart beats faster, and I feel sick. But the thing is, regardless, there is no escape and no relief. Even my going halfway across the country won't change things. When I'm not there, I feel sick wondering how she's being treated and I don't really have any peace. So either way, I'm upset. It's just that it takes a lot out of me when I do go, and the next day, I can't get up for work. (I work 40 hours and I also have a husband who has had a traumatic brain injury AND a recent brain surgery, so time needs to be taken for his appointments as well.) Emotional exhaustion, I guess. Maybe what I was hoping to get out of the responses is a sense that I'm not abandoning my mother. Or I was hoping to find strength in the knowledge that other people are powering through the same sorrow. And maybe, just maybe, someone might share some wisdom that might help me survive this. You both helped me. Thank you.
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While many caretakers have a lot on their plate, but, I don't think most also have a spouse with a traumatic brain injury too. That's a lot to deal with. I think that it's wise to listen to your body. If it's telling you enough, then accept it. We can't give infinitely without taking care of ourselves. It can take a toll on your physical and mental health. I saw this first hand.

I wonder if it would help for you to sit down and write out the positive things that your mother is receiving in her facility. Maybe, that can convince you that she's safe and protected. And if your mom was thinking clearly, would she want you under that pressure? I know what my mom would want.

Do you have reason to believe that she is not being treated properly? If so, I'd investigate, but if not, I'd try to figure out why you are so suspicious. You might see your own doctor. Maybe you are depressed. You might need help with that. Take care.
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Christine
I understand completely - I hate that I placed my mom on a place where she doesn't feel safe - other residents are scary - and I have many issues with the staff now and need to file a grievance but am afraid as I have no other place at the moment to place her
I wrk 50+ hours a week and visit her 3-4x a week for several hours in the evening as my leaving her when she's awake is too cruel
I dread going but worry about her everyday - I have hired personal caregivers for her so she has some care otherwise she'd have none there - another story - and they keep me posted on her to some extent
I'm in my 50s and my siblings in their 70s won't participate - I take time off work to handle everything
All I can do is pray - pray for her safety and pray the money doesn't run out and pray I don't lose my job - and when I have energy try to place myself in her shoes and pray I don't end up living as long
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Please don't beat yourself up so much! You are trying to do something that is very painful. I'm not surprised you have trouble doing it. When I was visiting someone, after 30 to 45 minutes, I had used up much of my youthful enthusiasm, and was ready to go. Are you near enough that shorter visits would be worth it?

If she can't speak, then most probably she doesn't remember when you have visited and when you haven't. So don't feel that you are abandoning her. Is there something that would reward you for actually going there? During a three-hour visit, would you be able to spend part of the time reading a page-turner novel that you save to read there? Can you pop a piece of delicious candy into your mouth when you arrive? And another when you leave, of course. Does she like to hear you read or listen to music? Can you choose something (Probably not gangsta rap or EDM) that you really enjoy that would also be pleasant for her?

Can you rub her hands and feet and legs? That is a way to give her pleasure that she can still enjoy. You need to feel that you are making her happier, and that's not an easy thing to do. Touch can help you feel closer to her.

I loved my mother, and lost her too quickly to visit her in a NH. As much as I loved her, I'm not sure I could have visited her for three hours at a time! Your mother would not want to be a burden for you. She would want you to come and share your love with her and then get back to living your life. Don't be too hard on yourself. You are doing a lot.
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Thanks for the additional responses. Sunnygirl, I do have reason to believe she isn't being treated properly. It's too much to go into here. We're doing our best to mitigate and I can't move her. MsMadge, you DO understand, and I fully understand where you're coming from. When you "complain" they retaliate and you need to have a plan B because no one's on your side. Jinx, I live about 15 minutes away. You gave me some good ideas and you're right, she would not want to be a burden to me. In fact, she told me years ago that when we got to this point, I should "Put her in a nursing home. Visit once a month and forget about it" because "I will have lived my life, and you need to live yours!" I wonder if she would still have said that if she knew how poor the quality of nursing home care really is. Poor Mommy....
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I see my mom 2 times a week when I'm home and it takes everything I have to go to the Nursing Home. I'm always fighting back the tears on the way home. I understand why most of the residents do not have visits on a frequent basis. It is hard. I'm relocating and will only be able to see my mom every few months. The staff tells me she does better with less frequent visits.
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My moms facility has volunteers that visit the residents. During the school year they had the high school seniors helping with activities to fulfill their Community Service needed for graduation.
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My Mum lives in a beautiful group home, currently with four other residents. The staff to resident ratio is 1:3, but it is usually even better than that. The carers are lovely, even saw my mum in hospital when she broke her hip bearing gifts (and I know how poorly carers are paid). Since my Mum has broken her hip her dementia has advanced; she seldom knows who I am, and when she does she cries, until I can distract her with an activity. However, after she stops crying I am able mostly to bring out many smiles and happiness. She no longer makes sense but I listen intently to her stories and reassure her. Although the staff at her home are beautiful and attentive, I doubt they would spend solid three hour blocks loving her. So, although seeing her decline really upsets me, I feel like I am contributing to her well-being. I don't get the idea that the old have lived their life and therefore we should get on with our own. They are still living and needing and giving love.
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One of the residential care facilities in our area advise relatives not to visit their close relative (who for the first time is in 2 weeks respite care - still recognises people and their names and is mobile) as they say she will become upset. It is now Day 5 of her respite and husband has been there twice and sent away without seeing his wife. He will now be interstate for a week. Has any one else had a similar experience? What do people feel about this policy?
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I can't understand being turned away - is the facility having a difficult time with her behavior ?
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Rellie, I know that it is sometimes advised that new residents don't get visitors for the first few weeks until they settle in, but since she is only there for a respite stay that is especially ludicrous. My mom's NH has a 24/7 open door policy, and in my opinion that is the way it should be.
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I understand the reasoning behind a recommendation of "no visits for the first x days," and it some cases it may be best.

I don't see why this policy should be applied to someone who is only going to be in respite a couple of weeks.

I would not have respected that policy for my mother. (No one suggested it to me.) She was having a difficult time adjusting to waking up at night in a strange place. I spent the night in her room for a week or so, to try to see what was going on. My presence helped her settle back down, and contributed (I think) to her accepting that her room was a safe place.

I cared for my husband (LBD) in our home for 10 years. I never promised I would always keep him home. I promised that I would never abandon him, and that if it ever became necessary for him to live in a care center I would still be his advocate, his wife, and his companion. I would never have signed him in somewhere that tried to keep me from him even for a few days. (I would not have spent 12 hours a day with him, either, but I would have been there enough so he knew he was abandoned.)

No advice applies equally to all cases. But not allowing a husband to visit his wife seems cruel to me. Recommending, OK. Explaining the reasoning, OK. But preventing a visit? I'd certainly never use that place for respite again.
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Well, I ask myself that alot. I manage to go 1x a week and even then it's almost unbearable. I have panic attacks going there and a mental breakdown when leaving. My mom has been in nursing home since February of this year, She no longer sees me as her daughter and will leave me in her room, When she looks at me and that's if she looks at me, its a look I don't really know how to explain. I know my mom told me before she was getting worse and told me that I worry too much. I told her I didn't want her to have this, I didn't want to lose her this way. She looked at me and said I'm OK, I'm not worried and I am ready to go. I try to remember this, then there is the guilt of dreading going to the nursing home, my dad is having same problem.
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Hi Christine

My wife and I have owned and operated a licensed Family Adult Home for over 20 years. We have been blessed to care for over 50 elderly and have new friends because of their family members. Personally I wonder what people think of people who devote their lives for this forgotten population.

Christine from our experience what you're doing is amazing. We would love to see more involvement as you are demonstrating with your mother. We have had people
drop off their parent and rarely see them. Sad because we know as having children the involvement and sacrifices we made as parents was out of love. The example you are displaying is clearly LOVE. As for the staff at this facility.

As a owner of a Adult Home I have compassion and empathy for staff that devote their energy and time for this special population of people. We see them as people who need help. So we help them but actually don't know them unless the family tells us who they are. A form with information is never enough. There are pleasant memories they experienced, photos, shows, music that bring them back to wonderful time in their lives. The staff needs to know what makes them happy because being alone and scared and when you don't know where you are is a bad time. Not just for your mother but for the staff as well. We are in partnership with you in this final stage of their lives.

One phrase that triggered a truth of what we do is "everything she's familiar with", what is familiar is your face and other staff in her life. Lets make it filled with as much happiness as we can manufacture by helping her remember her good times in life.

Christine THANK YOU for the example of LOVE you have bestowed on your mother.
Hang in there! God Bless You
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Do I visit my MIL? NO NO and never. We used to be very close, but now she's gotten into her head that I'm guilty of elder abuse and blabs this to anyone who cares to listen. I'm beyond heartbroken but I refuse to be insulted and called names. My husband (her youngest) can hardly stand to see her either, but I gently try to nudge him to go from time to time. It's just too awful for me to cope with, so I don't. (may God forgive me,).
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In my family's experience, the visits were every bit as much for the staff seeing that we were there checking on things and watching, as they were to visit my mom. We had a good degree of trust in the nursing facility but the fact was when they saw that we were regularly there, they seemed to care more themselves.
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What kills me is that MIL just lies or sits there like a lump with the TV blasting away without ANY other form of stimulation. Suddenly she's claiming she's deaf, but she's more blind without proper glasses that she refuses to ask for. (Totally baffled on that one). Her mind is so twisted, that I gave up a long time ago.
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Not all endings are happy ever after. Unfortunately this is the realty of growing old. The body breaks down, hearing, vision, memory, mobility and appetite. I understand your frustration with your MIL but your involvement in her care can be behind the scenes. Your attendance at the NH displays to your husband that you care about him. While he is visiting his mother, you go see the charge nurse and ask how she is doing. Find out if there any events
where you can be counted with her. She may not say or display any gratitude but it goes along way. The staff knows who is involved in there family members care.

God does forgive us. Don't be so hard on yourself you do care for her or you would not be talking about it.

God Bless DuchessMary!
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My mother has been in a wonderful group home (only six residents in a home - no nasty institutional stuff) with 1 staff to three residents ratio. Initially, I saw here every day because she was deeply grieving from the loss of her partner, but because she was so dependent on me I dropped the visits back to about three times a week, so she could better settle into her new home. After a broken hip and a bout of pneumonia, my Mum has deteriorated - she no longer can walk, is doubly incontinent and doesn't know who I am. But, she still seems to enjoy my visits, although they are more difficult for me. Some days I plan to see her but can't muster the strength. And then I'm plagued by guilt. At least I know she is beautifully looked after when I'm not there. I couldn't have placed her in a dementia unit in a nursing home - even the best were terrible.
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Thank you for your kind response. I'm currently working on shoving my guilt aside. MIL seems content, if nasty, and I just stay away.
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