I’m just curious to see the various responses. Obviously, it will vary depending on the relationship & situation. I’m just wondering what others do.
Mom has early-mid dementia and I’ve gotten into a routine of going to visit her in Memory Care weekly on the same day. For about an hour, we just sit in the main room and we talk about weather, food, my pets, etc. It’s kinda awful. I would probably be okay with 10 min visits but she always hates it when I leave and I always feel guilty because I would hate being left there or being in her shoes too!! I would like to visit less often but I worry that I’ll regret not visiting more when she’s gone. It’s a cycle of feeling either guilt, or inconvenienced and resentment, or fear of future guilt! When I ask the nurses if the other residents’ kids come to visit and how often, they say it varies but 1-3 x week for most. We never had the best relationship but I think we both did the best we could. I just find myself dreading the weekly visit because there are so many other things I should (could) be doing to feel productive but I also struggle with just sitting there trying to think of things to say! I’m the only visitor she has. I sometimes take her out to the store or to eat but it’s getting more difficult to do that. She’s always happy to see me but I’m not even sure she would know if I skipped a week. If I could touch base with a phone call instead of a visit, I would but she keeps turning off her phone by accident so an in person visit (25 min drive) is the only option. I work from home so it’s do’able. It’s just starting to feel more like a chore and I hate the guilt of not taking advantage of the remaining time she has since dementia will probably steal her ability to talk at all before we’re prepared.
How often do you visit if you’re in the same town and what do you do during your visit? Do you find it difficult to just sit and do nothing if they aren’t really capable of engaging except for simple conversation?
i sometimes go during a meal and sit with her in the dining room so that takes up part of the hour. That way I’m observing her table behavior as well.
my Mom doesn’t remember the visit anyway so I have to do what’s also right for me!
so for me, I feel stuck in this pattern until she gets to the later stages of Alzheimer’s.
If you are feeling guilty, it may be a conditioned response from when you were little if you were groomed to be a "good girl." If the parental love you received was given on the condition that you were doing what your parents expected you to do, then you may end up with a guilt complex when you know you are "disobeying," even when that disobedience is only in your mind. (If this rings true, you might want to read "You're Not Crazy, It's Your Mother.)
When we frame things by saying, "I have to" or "I should," we may be taking away the feeling that we have a choice. The fact is, you do not have to visit your mother at all. You may visit her; it is your choice. As others have suggested, you may find it helpful to bring something you enjoy into these visits. For example, I enjoy meditation so I put on some relaxing music and we both close our eyes and "relax for a bit." We go for walks - fresh air is good for both of us. We play our own "cooperative" version of Rummicub instead of the normal competitive way. Yesterday I stopped by to give my mom a shower and wash her hair, etc. When we were all done, I announced I had to leave to go grocery shopping. She kept saying, "You are going to leave right now???" The old me would have caved and spent more time with her, only to be overly exhausted by the time I got home. You must find a balance that is good for you, too. But if you are feeling uncomfortable with a one hour visit just once a week, I suspect you have other issues in the relationship which may need to be worked out. :) Best to you!
I have been thinking about your statement “People try to make me feel sorry for myself, but really it’s okay so far for me.” I know exactly what you mean! This has happened many times in my life, and more recently last weekend. With time, I have learned how to handle it so it doesn’t send me into THEIR idea of pity. Sometimes it catches me by surprise and I have to remind myself that others’ idea of a joyful life is not mine. I would SO love to have only a 10 minute walk to be with mother as you do. I am happy for you!
That must be a strain on you to leave and see her upset. It's hard to think about seeing that mood change compared to not seeing it all but you're missing out on spending quality time.
I don't know if my grandmother has Alzheimer's Dementia but she is very forgetful to a point where I feel like she may have it. When I visit her I stay about 2-3 hours. I go on my days off just to make sure she's doing okay and all. Things that help when i'm leaving those visits are make a list of realistic things she wants to do for the next visit.
I don't find it difficult to sit and have a simple conversation, it only makes my mind wonder when she takes a little longer to reply or she is taking her time to share her thoughts. I've learned how to be patient. It's just scary seeing someone who knew you before you knew yourself barely recognize you without constant reminder.
Best wishes to your mother and you.
I didn't worry if she remembered 5 minutes after I left that I had been there, I knew that she enjoyed the visit while it was taking place and that was good enough.
Depending on the ability level I think games that engage them in the moment are great, whether that is go fish, slap jack or bridge, whatever they can enjoy. I played cribbage with a gentleman that I companion sat with and I didn't know how to play and he couldn't remember, but we passed many happy laughter filled hours playing. It is a lot like engaging with a child, it's not what you do as long as you do it together.
This time of year is a good time to get craft items at high discounts, maybe build a gingerbread house or a puzzle.
Most importantly do what you feel like you should.
Sorry it's hard! I'm with you that it's not always easy. Try to remember how important you are to her, even if she doesn't know the best ways to show it!
Well, it's two hours a week. Two hours by the time you've got in your car, driven there, sat with her, and driven back.
Compare that with the time you spend on other things, whether you enjoy them or not so much. That might help put the actual time taken up in perspective.
To leaven the lump: what do you do during the drive? Could you put on music, or compose memos on your phone, or learn a foreign language? Is there much of a scenic view on the route? Is there a café on the way back where you could treat yourself to something as a reward?
During the visit - you could take a magazine, and share that with your mother; or knit; or sort photos, or write family letters; you could probably even sit and read a book, because I expect it's your presence alone that matters to your mother, rather than the scintillating conversation.
Working from home and running a household, I expect that like most people you're incredibly short of time to yourself. You could look on the journey time as enforced time to yourself, and what's more you're using it in a good cause.
I wouldn't, myself, recommend that you cut back more than you must. Once you do that it tends to be that the intervals between visits will start to stretch, and the length of the visits will dwindle, and eventually your mother will become one of those whom nobody has time for, and that would be very sad.
Try looking on the visits as above, as a kind of practical meditation, and see how it goes. If you go on feeling worse and worse about them there's no law to say how often you have to see your mother, but I think, if you possibly can keep them up, in the end you'll be glad you did.
I don't live in the same county as my LO (cousin), so, I cannot go every day. Plus, I am a caregiver for others and run my own business. But, when I do go, I try to make her feel special. I used to take balloons, flowers, treats, her favorite dish, fun or pretty things for her room, new clothes, soft sweater or night gown, etc. I show her everything I brought and let her feel how soft they are. I'll ask if she likes them, but, she may or may not nod. I'll sort through her clothes to see what needs tossing or make note of new items she needs. Apply lotion to her hands and arms. I might hang some cards or pictures in her room or play some music. I might walk with her in wheelchair around the facility to say hello to other residents, or go outside, if it's nice, etc. I often chat with the staff or family members of other residents. So, I get a chance to tell them all about her life, her travels, her career, etc. before dementia. I hope she can tell that I brag on her a lot.
If you are engaging in other things, it might make it less stressful for you and keep her amused. I don't rely on her for the conversation. She used to be able to talk some, but, it was often word salad and made no sense. And, for the last year, she doesn't talk at all, so, it's just me chatting, asking her questions and then answering them for her. But, that's okay. It's more the tone of the voice, the hugs, kisses, sweet talk to her that lets her know you care. She doesn't even know who I am anymore, but, that's okay too. In the moment, she has a soft person to give her my attention an affection.
To me, it's not for anyone else to judge you. You do what you can. That's all we can do. You might also consider hiring a visitor to go see her a certain number of visits per week. I know people who have done that. Also, check with the facility and local churches. My LO's facility has several church member volunteers who visit each resident every week!
P.S. I've just returned from a week visit with her. Everyday I'd go she'd say "No one cares. No one ever comes to see me" Then she'd forget who I was. I also have Hospice CNA go to facility so she gets extra care. She tells her same "No one cares or visits". So when I check with Hospice I get the feeling they think/feel mom isn't cared for by family. So now I'm going to check to see if I can find a local church or group who can volunteer to go visit mom during the week once in awhile when we can't. Wonderful idea! Thank you! Maybe mom won't feel/say "No one cares. No one visits" so often. Maybe not, but at least I THINK I'll feel less guilty? I hope so.
Alheimers/Dementia is such a horrible disease!!! 😪
Even visiting once a week is hard and exhausting, and this is with someone I get along with fine!
It's a long trip out there and I don't drive so I will either use public transportation but when I am too footsore for that I use car service. For which I use her money to pay. I expect that my brothers will try to sue me for wasting "their" inheritance on car service to see mom but I don't give a sh*t at this point.
This question involves so many variables as you say, so I can only relate my experience. My parents lived together in a nursing facility for almost two years prior to my father recently passing away. I live about 30 minutes away and before I retired, I would visit twice a week. I would stay anywhere from 30 minutes to two hours. After retiring, I visit usually every other day, and stay for the same time. Now that my mother is alone in the nursing home, my family and I have stepped up the visits. We don’t plan to continue this level for long but at least until we see our mother developing more relationships with the other residents. I go there around dinner time and stay until she goes to bed around 8:00 or 8:30. I think nighttime is the hardest time for her without my father, and it is a comfort to her to have one of her children there. We eat dinner together, then go back to her room, watch a little TV, and I supervise her nighttime routine: brushing teeth, picking out a nighty, praying together and tucking her in bed.
If I visit during the day, I usually spend the first 15 minutes of the visit on what I call “housekeeping”: organizing her room, advocating for her health with the nurses, CNA’s, social worker, etc. We might play Bingo with the other residents, watch a movie together or just sit together. My parents both had mild to moderate dementia so conversations were always very limited. I often bring some crochet project to work on, or do a crossword puzzle. My mother doesn’t need to be entertained by me - she just enjoys my presence.
Yes, I often dread going to see her, especially after my father died, but I don’t go on my own strength but the Lord’s. This power and strength enables me, once there, to enjoy my visit and create some good memories with her.
I have a friend with a 101 yo mom with dementia that has the same trouble.
It sounds very mind-numbing and frustrating. Maybe make a little list of fun things you can tell her about, then leave when it starts going down hill. 10 - 30 minutes should be sufficient. You don't NEED to spend a long time visiting. Check in, see how she's doing, and head on out. She may complain but no matter how long you spend, that's going to happen. Do what's best for yourself.
So we have found the best thing to do is to take her out to eat, which is a giant chore due to her being in a wheelchair, but it's a DIVERSION and keeps her griping to a minimum. She's very hard of hearing too, so the noise in the restaurant is a problem.........her motor skills are compromised so the actual eating is a problem........but hey, other than that Mrs. Lincoln, how was the play?
I don't feel particularly sorry for her being in Memory Care.........she's in pretty good health for almost 93, and has the money to live in a wonderful place with people who dote on her, so she's better off than many other people her age. She has spent her whole entire life complaining about how we weren't good enough, her home wasn't enough, her life wasn't good enough, my father didn't give her what she deserved............so nowadays, what's different? Nothing.
It is what it is. I do not feel guilty for anything because I'm doing nothing 'wrong'. Neither are you. Figure out what diversion technique you can use to make the visits less than dreadful moving forward. Bringing snacks is always a good one, I have found. Also, People magazine or a rag like National Enquirer or Star is good for a brief diversion or a quick look-see for what people are wearing or a juicy piece of celebrity gossip.
Also, I work as a receptionist in a MC community; here is what I've noticed: most visitors stay for about 20 minutes. They're in and out like the wind, visit for a short period, and leave. There are a few daughters who have had exceptional relationships with their loving mothers and they come nearly every day and spend 2 hours or more at a pop. There are TWO such daughters who do that on a regular basis. The rest of the family members come and go very quickly. The whole environment is difficult, so many family members take the resident out for a walk on the grounds or for a quick ice cream or to the McDonalds across the road. The visits are brief, is my point. They can't really engage in a true conversation anyway, so again, DISTRACTION is they key.
Best of luck and try to stop feeling guilty..........you're not doing anything 'wrong'.