Please help me, it's about my son's dignity? (Long but important)
My son is partially mute and 14 years old, 5'7" and 144 lbs, very healthy. However, he has failure throughout his body, including problems with digestive and nervous and vital systems. His body fails on him, from the inside out. His organs dont function the way they should, either malfunction or just decide not to do anything at all. It is a blessing that his heart hasn't given out yet (probably from all the doses of love!!). He has very poor coordination and has a hard time getting along.
He has good skills and intelligent and mentally independent however has issues that leave him in need of care. So I am concerned for his dignity, since he is dependent and inferior most of the time.
I love him so much and he is my world and universe! I worry about him so greatly that I cant even explain!!
Please help me, it would mean so much!
He already has issues with our family. I am his mother, and besides for his grandma, I am the only family figure in his life. He has a nurse who is a little close to him, however that is only during doctor visits and when she checks in with us weekly or biweekly. I am the one who he lives with, and I am the one who usually cares for him and has custody over him. So I try to balance it out, with not just medical care but also bonding time and such. But I don't know if things can be balanced. I worry about him, like a mother would, but I don't know what to do. He is his own person and he has a dignity, but I feel as if I strip that from him sometimes.
Any help? Can anyone please help me?
Here is what care consists of.
We've agreed that it is acceptable for me to spoonfeed him, since he has poor coordination. Often he can feed himself but requires assistance and supervision. Although I do respect him and I assure meals are satisfying. I am patient and I never rush him, and I let him be to allow him time to swallow.*Often he does drool or spit up because of digestive malfunction but I don't make a big deal out of it, I just pat him clean with a wipe.
A while after eating, I massage his belly to bring about eructation (burps) and flatulence and to improve digestion. I also massage him each night to help with digestion and circulation and to soothe him.*
I handle hygiene and personal needs and perineal care. I give him basic physicals or simple check ups once a week, from heart rate and stuff to "down there care" (as we call it). I bathe and groom him regularly and take good care of his skin. I diaper him since he dislikes any kind of bed pans or catheters (as his stubborn doctor once insisted). I change him when I notice he is soiled, otherwise every 2-4 hours I check him by default. Not to mention he does have sexual insecurity, even with puberty, so it is even worse on that part - but I do only as I need to with "down there care" (hygiene and frequent checkups), and we don't communicate about it because it makes him uncomfortable. I occasionally administer enemas or laxatives also, but that is optional and I don't overdo it.*I am fair with dressing. To his comfort, I dress him in either a T shirt or a sweatshirt or thin sweater, preferred jeans, and socks. For outings, I have him tennis shoes or sneakers. As pajamas go, he has a T shirt and either pajama pants or basketball style shorts. His clothes are changed every morning and night, or if he is uncomfortable due to sweating or etc. I know he prefers stripes and certain colors; otherwise it's neutral.
He has good skills and intelligent and mentally independent. He can do and enjoys doing puzzles or hand activities, but can only do so much due to low coordination. We can do activities but it is limited to things such as puzzles and me reading to him. We also have outings. I help him get shoes on, I get his wheelchair, and we are gone for a stroll- downtown or the park for fresh air or down a peaceful trail where flowers fall from trees in the spring. I take him to the store just to get out of the house and for him to get a sense of social activity and company.
He understands language and he can make noises that resemble words, however cannot speak much. He prefers to make sounds or be silent. I think getting him to speech therapy would rile up his emotions and pressure him too much. He accepts this, since are close and I understand what he likes and needs, and as long as I am kind to him.
I show him I care all the time. I hold his hand and I refer to him very endearingly. I do my best to not make him feel insecure or like he is down from everyone else. I let him know his feelings are important to me and I try my very best to show him that. He has his own bed, and I make sure he is good every night and I rub or scratch his back until he can sleep. And I keep a quiet and good seeping environment for him to allow him full rest, nature's third best medicine. If he is not in his bed, he is in mine and we are watching a movie until we drift to sleep, and I am usually rubbing his back or we are being snuggle bugs. Then I am there in the morning, and I try to be up before him so he does not sit and wait - hopefully not soiled or hungry or uncomfortable somehow. It kills me when I oversleep and find out he's been up and simply lying there.
I do talk to him kindly and considerably. I communicate with him and make sure I know what he needs or what he wants me to know, even though he has difficulty replying or talking. He cannot communicate easily but he is very intelligent and he has a very active mind. Even though his body cannot function correctly, his mind and feelings are still working fully. So I am concerned.
He does enjoy the care. He likes massages and such. He knows he can trust me and that I can help and comfort him. He knows I will respect him and do what he needs.*
However, things often seem to be too overwhelming, like my "full control" or his overdependence. I feel as if I invade or put too much pressure on his will sometimes.*
Please help me. How can I keep his dignity intact? How can I help him yet allow him to not feel like he goes by nothing?
What can i do? Any help, please?!
It sounds like you love your son a great deal and want only the best for him. I think, and this is just my take on your situation, that it is about balance. I think that your perspective that you are interfering with your son's dignity may or may not be his take on it. I think that the balance comes with managing the tasks of getting your son to stretch and do as much as he can do to be independent, and you holding back when you want to do certain things for him that he may be able to struggle to get done on his own. I am not sure if that makes sense, but sometimes as moms we have the natural urge to rush in and caretake, and in this case, that might be something that you need to harness. Does that make sense? Just my two cents, for whatever its worth. PS your son sounds lucky to have a mom like you.
Oh goodness, thank you!! I can't be grateful enough.
And could you explain a little further what you mean please?