Mother is not sharing how she feels. Suggestions?

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Hello together,


I'm 35 and my wife and I we are taking care of my mother. She cannot walk and sits most of her time in the wheelchair. We have been taking care of her for about four years now. Everything has been fine so far, however, we are having the feeling lately that she is not exactly honest with us and that she is not telling us the truth about her well-being. Every time we ask her if everything was fine she confirms but we have the felling that she is not telling us everything.


We are afraid that she might not telling us when she has particular pain (she experiences back and stomachache regularly) and that she suffers without reason.


At this point we don't know what to do exactly. Do you have any suggestions?

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John you sound like such a compassionate man, and caring for your mom at such a young age that you and your wife are, I commend you both.
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@jeannegibbs: You brought up a valid point here. It's a couple of things you have mentioned: The amount of food she consumes differs, she 'feels' he back regularly and she also moves around in her wheelchair quite often as if she wasn't comfortable sitting. Therefore I'm guessing that something is bothering here, but she is not willing to share. The reason why we were thinking of a nurse was that she might be more open to her than she is to us.

@StillTrying123: I really appreciate your nice words. I think it does help indeed, as we really might have been neglecting her too much lately.

@ohJude: Didn't think of this insights at all, especially considering different rooms. We will look in into this.

Based on this would you think that I would make sense to start sharing my medical knowledge with my mother? She is aware of her condition, but she doesn't really keep herself updated on medical topics. The other option I've been thinking in this context (instead of the nurse and in addition to being more in contact with her) was to 'teach' her what my wife and I know. I have the impression that she won't be able to keep herself updated on her medical condition if my wife and I were gone. We don't want her to treat herself but we think if we started encouraging her to inform herself about medical treatments and her condition (Giving her books etc.) that this might help her mentally in this context.

Do you think this would make sense? Or would this send a wrong impression to her? (Like that we don't want to cope with her problems anymore, which is not true - our goal is to encourage her to think more about her condition and become better at knowing what she is missing).

Thank you all very much for your support!
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John Wellness and by comparison unwellness are really hard to determine but here is a guide to some of the things to look for:
Social Wellness - are they interacting at the same level as they were - is there a change in the pattern.
Emotional Wellness Have they ever been able to acknowledge and share feelings of anger, fear, sadness or stress; hope, love, joy and happiness and if so has anything changed that is noticeable
Spiritual Wellness - Are they at peace in themselves - were they ever any different
Environmental Wellness i- are they happier in one room more than another...in one position rather than another - how does that manifest
Intellectual Wellness can they engage in meaningful communication - this doesn't have to be verbal and has this changed
Physical Wellness Are they eating as they usually do?, Are they drinking enough, are they angry or stressed by day to day living, are they lethargic or lifeless, are they bored or do they miss music in their lives?
Add to that the physical attributes like cold/hot/warm to the touch, confused or lucid (more than normal) Skin dry/clammy breathing normal or laboured all these sorts of things are indicators of wellness and unwellness
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My mother is determined not to admit when she is in pain, but I know she is.This is often a part of the personalities of adults who remember the Depression. She and I had a discussion about this yesterday, actually. I told her I often do not discuss my pain level with people. Then we moved on to her ,and I explained that I didn't always discuss my illnesses with her because I ignored them as much as possible just like she always has. However, my doctors have convinced me it is dangerous for me to ignore pain, and I wanted to keep her around as long as she wanted to be here on Earth with us. So, I told her it was time to let me know when her pain levels increased. We wouldn't make a drama out of it. She and I could chart our pain levels and would know when we had to seek medical help. ( I have severe non-smoking genetic COPD and a great deal of nerve damage due to a dog attack.) She opened up a little bit about how difficult life has been for her as she has aged and as she tried to recover from a serious traumatic brain injury. We then discussed how we were sharing similar feelings even though she is 88, and I am 60. I tried to put her in control with the charting of both of our medical information unless she did not feel like it. She likes this, and I realize she still needs to be my mother and in control of more of her life when she can. I opened this discussion by being her daughter even though her dementia has started becoming more evident. She still needs to be of value. I don't know if this will help, but my approach was concern and humor while being her child at the same time. Best wishes. You seem like a very loving and concerned caregiver.
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@GardenArtist: Thank you. You made same really good points on the hassles for her when leaving the house with the wheelchair. At this point we have never considered a nurse as a friend/partner for my rather as a doctor. But we see now how this might bring some real value to her.

Thanks also, ohJude. Currently we cannot really think of any indicators to "measure" her well-being and how it evolves. As you indicated that we should keep hold of her facial expression, skin color etc. do you have any suggestions at what we could look at? Our doctor and we observe her "sitting-pattern" (How much she moves while sitting, how upright etc.) and any signs of unusual facial expressions. The time she spends in the wheelchair compared to her time in bed has declined over the years, which is also something we look at, but we have a hard time figuring out 'short-term' status. What are we missing? Is there anything you can think of we can keep hold on as you mentioned? Thank you all very much!
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John, children can have pains or other discomfort before they can even speak. Persons unable to speak, such as after a stroke or with dementia, can have pain they cannot describe.

Parents of very young children and caregivers for persons who cannot speak learn to interpret out-of-the-ordinary behaviors and try to resolve issues, sometimes by describing the behavior to a medical practitioner. I recall when my young son had an ear infection which we finally had diagnosed because he was uncharacteristically irritable.

So, what are the specific behaviors that make you think something is wrong and Mom won't/can't tell you? What gives you the "feeling" that Mom isn't telling you everything about her well-being? If you called a nurse helpline, what would you report? Is Mom not eating as usual? Going to the bathroom more frequently? Less interested in activities? Why, exactly, do you suspect something is wrong?

I am dealing with a couple of chronic conditions. Sometimes I talk in detail about what is going on with me, to close friends and family. But sometimes I am just bored with the topic. I'm managing the best I can. I see the correct doctors. So when someone asks (sincerely) "How are you doing today?" I may just say "I'm OK." Could your mother be just plain tired of answering "how are you?" all the time?

Mom has been with your four years. She is wheel-chair bound. What has changed recently that you are considering having a nurse visit weekly? I'm all in favor of bringing in whatever help is needed. But I guess I don't see from what you have written why a nurse is needed now. Maybe a companion to talk to would do about as much good.

Have you considered an adult day health program for Mom? She could go one day a week (or more), have a chance to socialize, have some activities,and a change of scenery. Or maybe just going to a senior center on certain days would be a good diversion.

If she has a physical issue she isn't telling you about, getting out of the house regularly isn't going to cure it. But you aren't sure she has a medical problem. And adding something interesting to her life won't hurt in any case!
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Hime =rhyme ^^^ predictive text is a b%^&*
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I agree there is a lot of fear in older people about 'if I say too much they will make go to a home'. One thing I have looked for in Mum over a long period is wellness. You can tell whether Mum is feeling her usual self by her skin colour, her facial expressions, her general existence and you need to keep hold of that all the time. That way when you see a deviation you can actually say, I can see you don't feel your normal self today whats up sweetheart and she will then feel comfortable to tell you. If she says Im fine (and they do that a lot) I make a joke of it using a hime I used with my kids when they were toddlers you're fibbing you know and I know cos your my mummy (to kids was cos I am your mummy) now tell me whats wrong before your nose hits your tummy!

She then smiles and usually says my tummy hurt, back hurts, I feel tired, washed out but it is one way through humour to get at the reality.
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Absolutely. Home care nurses that I've met have developed a fondness for the elderly, as well as a way of working with them that isn't often seen in doctors' offices. Home settings are certainly less formal and less intimidating.

You might try explaining the visits to your mother in the sense that you want to be sure you're not neglecting her with your work schedules, and think it would be much, much easier on her for a nurse to visit her rather than take her out, going through the rigamarole of getting the wheelchair into the car/van, exposing her to the ordeal of transferring into the car, and worse yet, being exposed to frigid weather, if you're in cold states.....or being exposed to others at a doctor's office, especially as flu season approaches or is already in process in some states.

Couch the change in terms of how you're thinking of her, especially avoiding having to go out. Be there for the nurse's first visit if possible, but leave the room after introductions and explanations.

Your mother's doctor could script for a nurse's home care, which might also include PT/OT and/or a social worker.

Arrange to have the nurse contact you or your wife at work, after having explained to the service first your concerns about your mother. Nurses will do this and frequently contact me if I have some concerns I don't want to share with my father.

Good thinking!


Also, if meals aren't a family event except for Sunday, make daily dinner meals with one of you an event with your mother. Alternate, but Mom has to eat sometime, and if you can coordinate either you or your wife's schedule, make Mom feel that you're doing it specifically for her.
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