Hello everyone. I have quite a few posts on here about my 77-year-old mother. Chronic pain, back problems, post spinal fusion, opioid dependence, 10 year mutual estrangement, hoarded house. All the fun things. Her quack of a PCP has been giving her hydrocodone 10 mg since two years ago. When her neck surgery was completed and the surgeon stopped. The rest of her spine has other problems and she has chronic pain. New developing problem pain in her hip. The shoulder has been looked at and it’s just got some bursitis. She’s basically in bed all day only upright for short periods of time. But can certainly get up and go to go buy cigarettes. But yet I can’t wash the dish. Anyway. Her PCP office is being run very unreliably. They are having all kinds of problems and I think it’s a sinking ship. I think he will retire with the newest set of location building and financial difficulties. we now must figure out what to do about her opioid dependence. She’s had three procedures on her back through pain, management ablation, etc. The next step they said was to get a pain pump implanted. She is refusing. I can say I have doubts about it myself. The success rate seems hit or miss. It’s also going to be a ton of trips and maintenance again out of town to obtain this Care because we live out in the sticks. Pain management doctor said he would not give any more oral medication. It was get more procedures or nothing. I found a new PCP that advertises that he treats addiction. I thought this is the guy that can handle her problem. Also factor in the pharmacies tend to not have these pills, which is what we’re currently dealing with this weekend.Her PCP also has really just neglected the rest of her health, takes a week to call in antibiotics, etc. She needs a better doctor. He is also literally ignored her wheezing lungs. Her CAT scan reports of her thoracic spine show hard-core evidence of emphysema. All ignored. He never even actually listens to her chest.
so I took her to a new doctor and he right away agrees that she has emphysema. Wants to put her on inhalers. Wants her to see a pulmonologist. Says he could only give her 7.5 mg Norco and only for two weeks. He wants to substitute the Norco for Suboxone. He says the Suboxone has some pain relief properties, and it will also prevent withdrawals. Wants her to do PT and things like tens unit, etc. to help her pain.
she is very against PT. She’s tried it before and says it makes her hurt worse. And he’s telling her she can go at it gently and tell the PT folks when it hurts to back down. But she’s very against it all. She’s against getting on any inhalers because it cost money. He became very frustrated with as he put it the “roadblock “she was putting up. it became a very intense to our discussion. I actually told the doctor that I am wearing out. I just had an MRI of my own neck that shows some problems that will probably need some pain management. I don’t take pills because they do not agree with me. But injections or things are probably things I need to look at. I have a frozen shoulder. I am 53 and just physically not feeling well. My patience for this is gone. I have a 24 year-old trained computer engineer son who also has autism and major depression and he has been homebound for the last year and a half. Thankfully, my daughter is doing well away at college at least. But both of my kids just had to have colonoscopies and we found out they both had very unusual pre-cancer polyps. They now have to undergo genetic testing to see if they have Lynch syndrome. Scary stuff.
But the doctor is starting to talk about maybe we could find a different pain management doctor that would just give her pain pills if that’s what she wants. But he was not keen on that. And again our resources in our area are limited and I’m seeing once again a path where I’m hauling her all over creation. That’s when I said I’m wearing out. I have my own circus in my own household. More in comments…..
You were estranged from this woman for a reason. Nothing you suggest does she agree to. She is going to do what she wants and die like she wants. Take care of your kids and you.
I hear your frustration with totally disorganized pcp!! It's terrible. Do you have PACE in your area? Remind me, is she on medicaid now? It's more holistic and more interdisciplinary care. With your mom's multiple issues she would benefit from an all in one type of care. We have it here but mom is over the limit for income. (And contrary to what I read on several atty websites Miller trusts are not available in my state. One atty apologized to me and told me they were taking the article down from their website!)
Pain is horrible and I'm sure your mom is terrified when it comes on. My mom fell recently and fractured her lower L2. I was also worried about dependence as she would take them before she actually got the pain she was so scared of it. I don't know anything about pain pumps but it seems it would be a steadier dose?
All I know is you won't be able to solve this all without her buy in and cooperation. She definitely needs a better doc but even at that, the pcps send them to specialists and that's where you have the driving all over the universe. She is a very medically complex and that is very hard to manage. And even with that she has to want to do the least invasive things first like pt rather than jumping to the pills. It's so hard!!! Esp when she is not working with you.
I don't have any definitive answers for you other than you MUST take care of yourself and your family FIRST. If that means resigning as POA you may have to do that. Are you seeing a counselor? I know, who has time for that? But it really does help with self care (not just a bubble bath but setting boundaries, role playing difficult conversations etc).
Hugs to you..
her crazy PCP, the one who is medical Director of one of the hospice, said he won’t qualify her for hospice and that he can’t get her palliative care without certifying her for hospice first. I’m not sure that’s completely true. I gather that palliative care is more of a complex career kind of situation? i’d love to get her in some different housing also but I just don’t know how to make that happen. Selling her house and using the proceeds would buy her maybe a year in assisted-living if she self paying. And then she would have to agree to going through the rest of her assets to qualify for Medicaid. We’ve already seen an elder attorney and I understand a few things about spin down, etc. She’s making all of this a lot harder.
I did an AI analysis of her CAT scan report. It is stating a stage two or 3COPD situation. I know we would find out more from pulmonary function testing, and perhaps a full CAT scan of her lungs. The current reports we are working off of just shows sections that were imaged when she happen to be getting thoracic spine CT. Part of me wonders if this crazy pain is related to a cancer situation. I think she is wondering the same thing. But, she’s had this pain for two years now, so I feel like if it were cancer, it would have killed her already.
I think it is unrealistic for a 77 year old to stop smoking unless they want to.
Grandma died at age 62 from smoking related diseases. Smoking is heavily linked to osteoporosis and causing bone and spine deterioration.
I'm in Florida and recently helped my 77 year old neighbor who broke her shoulder and had to wait 8 days to get shoulder replacement. We learned the hard way that it is very, very difficult to get adequate pain meds prescribed. The neighbor was prescribed the lowest dose of oxycodone and it did not even take the edge off of the pain. She moaned every 10-12 minutes for 8 days from the pain. At day 2 I called the ER who assessed her and we got authorization to add OTC pain meds to the oxycodone. This did not do much either.
If she runs out of pain meds and starts withdrawing I'd be inclined to call 911 and let the hospital deal with the withdraws.
Given that she is mentally competent I'd back way off and let her make her decisions. I like the AlAnon book called Courage to Change. It costs around $8.00. It is mostly about family members making their own boundaries in the face of family members with addictions.
Given the fact she also has mental health issues I'd also back way off and give yourself a break for awhile.
If Mom has COPD, she must stop smoking as her main priority. She will end up on 24/7 Oxygen soon, at the rate she's going. Then she can blow up a building smoking and using oxygen!
Inhalers are a Band Aid for COPD. They cost over $150 each and are "rescue inhalers" and not a regular solution to assist her breathing. Problem is there isn't one. My sister was diagnosed with COPD, while going to a Pain Clinic to switch to Methadone, to get off opiates for her other injuries, like a ruptured Achilles tendon. I'm surprised no Doctor has suggested methadone treatment.
Stop taking her all over, especially if she continues smoking and argues with every new Doctor. Until she quits smoking, she's not serious about her health at all. My chain smoking sister died at 56 with COPD. It is a terminal illness, so Mom won't be complaining about "pain" when she can't breathe anymore. She is wasting everyone's time, especially yours. Opiates are the least of your worries.
You can't help people who won't help themselves. Worry about YOU.
”She’s basically in bed all day only upright for short periods of time. But can certainly get up and go to go buy cigarettes …”
And:
“She needs a better doctor. He is also literally ignored her wheezing lungs. Her CAT scan reports of her thoracic spine show hard-core evidence of emphysema. All ignored. He never even actually listens to her chest.
so I took her to a new doctor and he right away agrees that she has emphysema. Wants to put her on inhalers. Wants her to see a pulmonologist…”
I get that there is a pain treatment aspect to this you’re hoping to address, but I have to wonder, gently and respectfully, why are you considering trying to drag an active smoker to a pulmonologist? What would be the point besides wasting his or her time?
If this poor woman isn’t cognitively disabled (forgive me if I missed it in your posts) and not considered competent to direct her own medical care, I would let her figure it ALL out (including what she wants to do when the pain pills run out) and just be a friendly, loving daughter with steel-reinforced concrete boundaries.
Thinking of you.
she thinks because she feels OK she does not have COPD. The doctor explained that a lot of times people get used to feeling a certain way and don’t realize that they’re actually sick. And of course she doesn’t do anything physical just lays in bed all day mostly. She does not want to take inhalers because she does not want to end that like her friend who is very very sick with COPD. I said stopping smoking and getting on the correct medication is a path to prevent getting as sick as her friend. but her mind is twisted. She can take anything and turn it into a negative. So that’s where we are at. And they’re so so much that the doctor does not even know about our history. And so far no doctor has told us she needs a facility. She can actually still bathe and dress and ambulate on her own. She can’t go great distances or in big open areas cause she has terrible balance from her neck issues. I would put her in for assisted living in a heartbeat if I had the money, and if I knew she would behave.
her psych issues plus past history of getting hospital delirium every time she’s admitted will cause big problems. She will decide the staff and other residents are against her, she will throw a fit about anyone else managing her medication’s, etc. But if I knew how to get this funded, I would hard-core push for assisted living. We are in Texas. I’m getting conflicting answers on if Medicaid pays for assisted-living. There is a place locally that has a total of five Medicaid beds I am told. But I wish we could go that route. But it’s not a total solution. I promise her behavior will be a problem. So I remain stuck. Do any of you have experience with Suboxone?