When should I visit?

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When should I visit?

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My mother is finally in the nursing home. After so many months of working toward this it came in a single phone call. With so many thoughts of getting my life back, the moment of wheeling her up to the dining room table at the home and walking away it felt like my heart actually shrank. Nothing like a life filled with guilt. You'd think I'd be used to it by now. Experience of a life poorly lived.

That being said, I am faced with the next hurtle. The question of when to visit. My mom became over attached to me when the dementia increased. If I stepped out of the room she would start yelling and banging on her side table within minutes. 90% of the time she had no actual reason or need. She just wanted me in the room at all times. Now that she is in the home I don't know when my first visit should be. If I go too soon she may think she's coming home. I'd have to explain it all over again and double down on the guilt. Not soon enough and she could feel abandoned.

Any thoughts?

((To those who have read my previous post. I do not hate my mother. I hate what has happened to her. I hate the dementia that takes over her body and turns two people into screaming lunatics. She can't be held responsible for her actions. I will be held responsible for mine.))

Alzheimer's & Dementia Skilled Nursing Facility

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I think you have to ask for guidance from the NH and do whatever feels right for you, I know that many people will tell you to stay away for the first week, two weeks, even three so that they settle in, I could never have done that.

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I hope it's reassuring that I completely understand what you express about hating the disease, not least hating it precisely *for* what it has done to the mother you love.

So I hope you can make another very important distinction, that between feeling heartsore about your mother, and feeling guilty about your own part in what is happening to her.

It's especially important to make that distinction because whatever you do you are not going to be smiling and happy about it. Your poor mother will still have dementia. You will still feel bad. But feeling guilty, as such, would imply that you "ought" to be doing something different, when the reality is that there aren't any better choices. I couldn't agree more strongly with CW that you must do what feels right for you, taking account of advice but making your own decisions.

None of this is your fault. Yes, you quite rightly expect to be responsible for your actions. That does not make you responsible for finding perfect solutions that may not even exist.

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You’ve done your best for your mom and she’s been blessed to have you in her corner, and this really makes me hope you can find a way to let go of the guilt. Someone here said (Barb?) that guilt is for those who’ve done something wrong. None of us is perfect but don’t be so hard on yourself, you’ve done a good job in trying circumstances. As for visiting, I’d say go when your feel you should, but don’t stay long at least at first. That may confuse mom and have her think she’s going with you or that you’re there to stay. Keep it light and friendly. If she gets upset, bow out and leave, try again another day.

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Considering that your mum has become very attached to you as her disease progressed, I would check with the staff of the NH as to what they recommend. The goals here are to do what is best for your mum's adjustment and also what is best for you. Please try to let the guilt go. (I know it is not easy) You are doing nothing wrong and many, many, things right. Pat yourself on the back for a job well done. You are a great daughter. Your mum is fortunate to have you!

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By the way, I'm her youngest son. Mom spent most of her time calling me Brandi (the name of one of her granddaughters) so I'm used to it.

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I am not a patient person. I didn't want the responsibility of Moms care. I had been the one she counted on. I was the girl and the oldest. The child she could make feel guilty. TG when I lost patience, she forgot it. I try not to feel guilt because I am the only child of 3, 2 brothers, that did anything. No, don't blame my brothers, one lives 8 hrs away. I blame my Mom for not depending on them a little more. Asking "why don't u call more". My Dad said once that he couldn't believe my brothers didn't send Mom gifts for BD and Mother's Day. But he never said anything to the boys.

Its now becomes what Mom needs not what she wants. Maybe give her and you a day or two. Then go visit. If she gets agitated, then leave. When she is good stay longer. Don't torture yourself. You did not cause this so you can only do your best.

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I think it depends on the state of Mom's memory and how she reacts to your visits. My father has vascular dementia that has brought out an angry and uncooperative personality and makes a lot of his thinking absolutely crazy; but, his memory still works fairly well so Dad knows how often someone visits. If my estranged brother has been there before me, I usually get angry Dad and my visit might agitate him further. My mother has almost no short term memory but still thinks well when she can remember all the needed information. Mom would not remember how often I visited but because her personality is intact she is unlikely to be agitated by my visits either. So if/when Mom needs placement I would visit daily. I visit Dad in MC weekly before my estranged brother begins his daily visit.

I suggest taking some treat (my dad loves ice cream sundaes) and making a short visit. If your mother becomes agitated then leave immediately; otherwise leave after a short visit for some appointment (real or imagined) telling her you will see her soon.

At some point, she is going to ask to go home; you just cannot avoid it. Tell her again that she needs more care than you can provide on your own. That's absolutely true - so NO GUILT. You are not responsible for your mother's dementia and you are not responsible for her needing NH level care. You didn't fail or abandon your mother by making sure she has the care she needs. Once you let go of the guilt, this conversation is regrettable but not nearly as painful.

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From my own experience, if you are near enough to the facility, I advise you to visit soon and often at least for the first week or two. Not necessarily for your mom's enjoyment, but to (1) make sure she is being properly cared for and (2) demonstrate to the staff that you care and are watching to see that she is properly cared for.
Even if you drop in at night when she's sleeping or just peek in on her when she's doing an activity, you will also be reassured that all is OK--or you'll find out it's not, which is another problem to be addressed.

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It might be a good idea to wait a few days, and then visit nursing home or memory care unit no more than 2-3 times per week to set a pattern. My daughter got into the habit of taking her father's (my ex's) dog in to visit every day in the beginning and now he gets upset when they aren't there. He has Lewy Body dementia by her diagnosis (she's a psychiatric RN). I told her not to do that for me (I have no pets anyway), but I hope I die at home before I need to use my LTC policies. Not likely, these days.

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Give her time to settle in and give yourself some breathing space. Visit first with management to get a report of how she is doing, then hang around a bit ( out of sight) to observe her at meals or activities. When you visit her for the first time, make it brief right before lunch so you can walk or wheel her to an activity, then leave. Remember she is in their care now, give them a chance, then fill in with the extra touches she might need. (Start a new brief routine of checking personal supplies, etc. Keep moving don’t linger) She needs to transition to her new surroundings and you need to form a relationship with her caregivers. (Spoken from twelve years NH to MIL visits that started daily and eventually evolved to weekly visits)

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Call the nursing home frequently and discuss with the nursing director. Let them give you some guidance on how your mother is adjusting. As you have painfully experienced, people with dementia relentlessly seek whatever gives them a feeling of comfort. It will be best if your mom finds someone or some activity or place at the facility to transfer the intensity she directed at you. Then, you can visit and start the process of becoming a daughter again. Be very careful to make sure you don't take on tasks that can be performed by the SNF. Your mom is in brain failure and needs the lines of those responsibilities to be very clearly drawn to the staff.

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1 - be prepared to explain over & over about this is her new home - use nice words like the tub room is the 'spa' etc to add the best tone on explaining this to her - you could even say that you were worried that your declining health would mean she would not be taken care of well enough [see #4 below]

2 - go when you feel you would like to see her - she has been a significant part of your life for a long time so you will miss her to

3 - especially the first few times bring something with you like a favourite coffee, 2 squares from the bakery to share, a plant [try a cactus as watering will be sporratic] - nothing too big just a bit - if you can share an item so much the better - I have even brought my mom her favourite diet iced tea

4 - I never said it was permanent to mom but 'once you get back the use of your right hand' so she took it as a rehab place & would say 'I'll do my exercise more often' then I would give her a ball to squeeze as her exercise & she would do it 4 times then stop - the ball was 1 of my 'props' for this - she was quite content with my fiction

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Wow, I hear you... Living it now.... I felt the same way, when she first moved in (March of this year), I went every other day. But, she always questioned where she was & when she was going home. As you know, trying to explain and rationalize with someone with dementia is very frustrating.... Unfortunately, we usually end up in an argument.... I now go twice a week, I go Thursday nights when she is at bingo, just to straighten up her nightstand ( refresh snacks, straighten it up) and I do her laundry, so I straighten the closet & swap things out. She gets upset when she sees me bring clothes in - "she is not staying here!!" : ( The I go on Sunday afternoon for a visit. Sometimes it is good, but mostly it isn't.... I found that they need to establish a routine, and I do not want to interrupt if she is at an activity, even though she will not remember going...

See how it goes with your mom, is she receptive to the facility, is she trying to make friends? If she is, pull back a bit, let her have some of her independence back & you can try to get some normalcy back to your life!

I wish you the best!

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Not saying this is the right answer, but in the case of my dad I was there almost every day in the last few weeks. I understand some just are not able to do that, and it was hard, especially watching him decline. But as he passed, and been grieving, I do feel better that I was there as much as I could in the recent weeks. He may or may not have always been aware I was there, though I think he was, but it has helped me knowing I did that.

Again, not saying this would be the right answer for everyone.

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My answer will sound ambiguous, however visit as often as YOU feel the need to. I say this because even if you visited every day she isn’t going to remember you were there and may get angry anyway. She will always ask to go home, my father does and we live in his home, but this isn’t the one he remembers, he is talking about his childhood home. I just always tell him we are home and we are saving money to go visit his home in Michigan. He is usually satisfied with that answer. You can come up with an answer that will satisfy your mom also when she asks to go home. Good luck and enjoy your mom in smaller doses.

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Give yourself a break initially. Then go as often or as little as you see fit.

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