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?
My parents were like that when it came to how often they had fallen in and outside of their house. We usually knew when Dad fell because Mom couldn't pick him up. It wasn't until after my Mom had passed, due to a serious fall, that Dad admitted that she and he were regularly falling down the stairs. Yes, even in the late 90's they were hiding such a serious issue because they didn't want to move.
It could be your Mom is afraid if she has too many aches and pains, that she would be moved into Assisted Living. And she thinks those places a dungeons instead of really nice 4-star type hotels. What is amazing is that when visiting such a place you hear the residents chatting to each other about ALL their aches and pains :) And my Dad, who recently moved to such a place [and is happy as a clam being there] is now more opened to his health issues.
As you mentioned the case of your dad you made me consider the following: Do you think that she might not be willing to share (as we assume) because she doesn't fell like sharing it to us and would be more open to like-minded people? Friends etc.? (We haven't thought of this so far but based on your experience in the Assisted Living might it make sense to "ask through her colleagues/ friends?)
The other action to take is to address the issues you know exist, address the pain issue and whether or not it can be modified by therapy or meds, and eliminate those potential causes as the reason for her silence.
I'm wondering also what she does all day long. Is she alone, thus encouraging silence and self containment, or does she have an opportunity to interact with your wife and other family members? If you don't live in a cold climate, is it realistic enough to take her to a senior center to interact with others? Perhaps she just needs some outside stimulation to help her open up, if that's what she really wants to do.
My wife and I are taking shifts and every time at least one of us is at home but, especially as both of us have been working more at home we have less time to sit with her are just talk. We still ask her about her well-being of course, but active 'talk-time' is becoming less In the beginning we were talking more with her because it was new to her and us, but in a sense we moved on and don't talk to her as much as we did when the her problems started, but neither less than before her problems.
We have never thought about this is an issue, because for us this was just normal. Maybe she is feeling neglected?
What about at dinner time, a logical time for sitting and chatting about the day's events?
Anyway, it's worth a try to just try to recreate that quality time, although be very subtle or she might suspect something is amiss!
My wife has just brought up the point that it maybe might make sense to have a nurse come weekly for 'check-up'. Currently we are only going to her doctor on a regular basis, which is absolutely fine, but my wife thought that a nurse might be more experienced in this. I think it's a good idea, but I'm also worried that my mother might think that we are bringing in a nurse because she is too much of a burden too us. Would you say that this might make sense at this point?
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.
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.
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!
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!
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
@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!