<p>There are pain specialists. Most of them are neurologists or anesthesiologists. Maybe a consult is in order?</p>
<p>My dad had terrible pain in his back when he was 87. He was never a complainer, not by a long shot, but it just got worse and worse and no one, including the pain specialist, could do anything about it. Eventually at 88 he had a modified laminectomy and walked out of the hospital 4 days later pain-free.</p>
<p>My brother has some kind of osteoporosis caused by anti-cancer meds. He was unable to walk or even sit up for more than a few minutes until he had a procedure in which they glued his vertebrae to repair them. It was done arthroscopically by a neurologist and he went home the same day. He’s doing so much better now after months of truly debilitating pain despite massive doses of meds.</p>
<p>Eyemamom, I know it’s a long-distance situation for you and I seem to recall that your sister who lives nearby is kind of overwhelmed (and I can understand that! big time!). Do they live in a big enough metro area that you can find some really good up-to-date doc to take a look? Before my dad had his surgery, I took him to see an ortho guy and a neuro guy. Both proposed basically the same surgery–there is definitely an overlap. Basically they needed to see the MRIs; although I took him to both doctors, I think they could have come up with the solution without him being there. And my brother, who lives on an island with a terrible hospital and not a huge range of docs, had his surgery in NY after express mailing the MRI disks to NYC where he later came for the surgery.</p>
<p>My sympathy and empathy, big-time, to you and your sister. </p>
<p>Have they tried anything like a TENS machine (aka stim) or lidocaine patch? I’m not sure if you said where (L4 etc) but you can check into having steroid injections done (I do it 2x year) I see older folks there but not sure how old they would go. It takes about 15m plus waiting around time. Also …placebo effect/feeling like you are being heard for all of the above.</p>
<p>One of her best friends son is an anesthesiologist and pain management specialist. She spoke with him at length on the phone about everything and apparently he’s in touch with her doctor now. She did say today was her best day in a long time. Funny enough, I live in the area that would be widely recognized as having excellent medical care, but she has always believed nothing good happens outside the ny/nj metro area. No one is smart outside that area, no decent schools, restaurants, etc. lol In speaking with her this afternoon she is getting pt twice a day and they’re making her get up and walk. So thank goodness for that. She’s been denied for the cement, but I gave her a tens unit, she’s had the patches, epidurals, injections, etc.<br>
Fingers crossed the worst is past her now. My sister is saying she’s considered ‘respite’ not a resident of it so there is no intention to keep her there longer than necessary. </p>
<p>My dad had the steroid injections several times, at age 87-88. No problem due to his age. Of course they didn’t help but the pain doc is the one who referred him for surgery.</p>
<p>eyeamom- my heart goes out to you and your family. This stuff is tough. Good to get a pain management specialist in there, especially if they have a geriatric expertise. Geriatric pharmacologists can also help look at the whole picture. Drug interactions can be significant and it may be possible perception/experience pain can sometimes be impacted by the level of support and care available, if that is a component of the situation. All the best. </p>
<p>Could I ask another opinion? My mom is getting really nasty about my sister. She’s really the point person. She’ll go visit and mom just gives her orders… get me this, go to the store and do that, etc. But she’s also just ungrateful, not thankful and talks badly about her to me, and I’m sure others as well. I called her on it and now have been cut off from information as well. She has always been very, very secretive. A mantra in childhood was to make sure we never told anyone anything about our family. She was always very worried about what the neighbors knew or thought. Even as she got older she didn’t want any neighbors knowing if she went to the hospital and they were actually caring friends. So now she’s shutting all of us out of what is going on believing it is only her business. She’s having trouble keeping things straight so it isn’t practical in the slightest to just let her be. What would you say to my sister and what she should do at this point if mom doesn’t want her around or involved at all?</p>
<p>As I write this, I feel my words are a feeble reach out. But I want you to know you are not alone in this. A psychiatrist once said to me, something along the lines of, “You can’t control that.” (What a shame so many of us need counselors to help us through.) I wish I could remember the exact words. But it’s the old advice that you can’t control another, only your own words and actions, you can only try to do they best you can. And sometimes, it goes out of whack, they resist, they spew, they disregard. You have to sometimes settle for the knowledge you did the best you could, with a tough situation. And come to believe that.</p>
<p>I’ve had to walk away when my mother pulls this. (Partly because I had no other choice, partly to work on my own sanity or my kids’ needs, etc.) Over the years, it’s happened at some horrendous points in my family life, when I needed my own mother to be normal- or at least not cause issues. And I’m currently in one such period with her. It is a huge challenge, because we do want to do what’s right and want to know things are safe and sane for them. And we do want to help today, not wait for the S to hit the fan because they go off on their own faulty track.</p>
<p>My mother is disabled but not bedridden, as yours is. Can your sister have a talk with the docs/nurses, to say: our relationship is strained, please keep me informed in case there is a situation or crisis that needs my support, I am absolutely committed to help, but she’s currently blocking me?</p>
<p>I find these fits come in cycles. Some short time from now, Mom may not remember she sent her away. </p>
<p>eyeamom, What legal documents are in force with your mother? Does your sister have POA? Can she make health care decisions? I agree with LF that if possible, your sister should communicate directly with the health care team.</p>
<p>eyeamom- so sorry for this. When chronic poor coping strategies intersect with diminished health and cognition, it is quite a ride. lf and CF have you covered here. </p>
<p>If legal work with PoA, health care proxy docs and any relevant DNR docs are in place, you are covered to work around her by having sister communicate with medical team. If you truly fear that your mother has the potential and capacity to fight such contact legally, or such docs are not in order, it may be especially helpful to keep a running list of times where her behavior or cognition were compromised. It need not be shared unless indicated, but could be helpful in a “worst case scenario” (no cooperation, no ability to review medical info and make good decisions, no contact with family allowed to medical team). </p>
<p>If permission is in place and/or medical team is willing to keep speaking with sister (or you) as that is how the admission started, then no need to rock the boat for now. Just do the work around thing for vital information. What you describe is an extremely vulnerable person , either highly insecure or perhaps a bit paranoid, who is now severely challenged. It sounds like shooting the messengers is her way these days. Hope you can dodge the bullets.</p>
<p>Some of this is them tying to exert some power or control of their own, even if it’s destructive and pushes away their helpers. A crazy, “I can, so I will.” Very little thinking or filtering. Sometimes, it’s a psychological issue of theirs that we can’t affect. They may phrase it as some flaw in us, but it’s not. They may point to something we said or did, but that’s just the lashing out.</p>
<p>I see our challenges with my mother as her too often not giving us the self-satisfaction of a task completed, a loving gesture or a favor done. I’ll skip examples. But somehow it always comes back to my fault, something I did or said, some nagging, even the way I took a breath. </p>
<p>I came to realize it was a control thing, her own trap. So, remember in mid-Aug, when she got the hospital bed? The next week she sent me off to get XL bedding. Fine, it was on the way home and I did. </p>
<p>It’s still in my car. I suppose she’s using flat sheets (and I know she runs a wash.) But in the past six weeks, there has been one reason after another why I can’t come, can’t deliver, can’t finish this, can’t have that satisfaction. This is her. Not us. At times, we all need to remember that. No, it’s not easy.</p>
<p>Eyemom, wishing you strength and clarity of thought. Your mom is so very much like my aunt that it is frightening. I have found that her perception of pain is at a higher level than normal. We tried the cortisone shots with only minimal relief. The lidocaine patch is out because she suffers severe hypotension with lidocaine. She is 97 with a significant cardiac history and would benefit from surgery, (spinal stenosis and degenerative arthritis) but no one will perform the surgery. The neurologist does not want to up the pain medication due to a severe fall risk. She is on mood stabilizers but they are only minimally effective. It’s hard for MD’s to invest in her when she tells them they are “full of sh*t” and she refuses to follow orders. Her vascular dementia is just enough that it makes her so nasty and not enough that we could do things by going around her. I have bent over backwards trying to make things easier and nicer for her but only get criticized. I think some of you may remember the number of caregivers and agencies that we have gone through. One of her doctor’s told me 2 weeks ago that I should lower my expectations. Sending hugs.</p>
<p>@eyemamom you mom’s brain must run on overdrive on being ‘secretive’ or ‘guarded’ - sounds like a high level of discomfort with interpersonal relationships, big and small. No interpersonal skills to the point of alienating family and any friends (the complaining, then shutting down communication when called on it). The health decline just makes everything worse.</p>
<p>Sorry for everyone with struggles, pain, issues. Sending hugs.</p>
<p>My sister has medical power of attorney. My brother has the financial power of attorney, whatever that’s really called. He pays her bills. She went over to the new place today and is extremely satisfied with the level of care mom is receiving. She says they’re completely on the ball there and dealing with all of mom’s health issues. So we both agreed, let them do their thing. She’s fine where she is right now and doesn’t need us to do anything. No idea how long they’ll keep her, she’s in such bad shape, but they now seem to be managing her pain and dealing with other issues of hers. We both agree right now she needs to let them take care of her and let them really assess her. She listens better to “professionals” than us. We’re just calling or making quick visits. </p>
<p>Sounds like a workable way to navigate at this point, eyeamom. Glad the paperwork is in order and that the new place is good. Phone updates from the care facility can keep family is in the loop, but out of the immediate fray. Hope this professional input is absorbed. Hugs to all of you!</p>
<p>Well here’s a relief, I spoke to mom this evening and she says she feels like she’s turned the corner. Her attitude and demeanor seems back to her normal right now. I’m also numb with shock, she told my sister tonight she realized what was what - that me and my sis are the ones handling everything and keeping it all together. She even said she knows she has bumped heads with my hubby, but the truth is, at the end of the day he’d do anything for her (he would - he’s a no bs kind of guy and calls her on it, but will spare no expense or amount of time and effort to help her) It’s felt like it’s been overlooked or not realized that we’re the ones trying to make smart decisions, not just feel good ones.</p>
<p>I’m not up on specific medicare rules, I definitely know she is improving in this new place, but by no stretch well enough to leave yet. She has chf and she said she’s starting new meds tomorrow. They removed the catheter but said if it’s uncontrollable on the new meds they’ll put the catheter back in. If she is improving under their care how much time before they kick her to the curb? As I see it in the perfect world she needs another few weeks of recovery. We finally found a place that’s treating all of her, not just one symptom. And she likes them all! She said they’re so nice to her because she’s very lovable - lol </p>
<p>Hi, haven’t been out here lately, but… my parents are still struggling to take care of their house. In their mid-80s, they have lived in it for 50 years, and my dad does not want to leave it. About 6 weeks ago Dad had major eye surgery (pretty much no vision for about 2 weeks, now some is coming back, but he still can’t drive, don’t know if he will be able to or not). He probably shouldn’t drive, he is completely blind in one eye before he had this surgery on his other one. And there is no public transit in their town, at least out where they live. Mom had a stroke last year, has recovered a fair amount (maybe 80%), but can’t drive or use the stove. Then Mom fell down the basement steps 2 day before Dad’s surgery – 7 wooden steps to a concrete floor, but amazingly, nothing broken, no concussion, etc. Just cuts and bruises. Whew.</p>
<p>But… Dad has realized it is hard to keep Mom safe in the house with stairs to bedrooms, and laundry and storage in the basement. So he has decided he wants to add onto the house (master bedroom, laundry on 1st floor) and get someone to live in to help if needed. I am not a big fan of this, my parents are quite difficult to get along with. I envision a series of caretakers with one bad ending after another… He sprang this idea on Mom of building an addition, and she is NOT in agreement. She wants to move – there are condos, a few apartment building in town, or even a small rambler house. So now Dad is trying to enlist me to tell her what a great idea this addition and live in help will be. Well… I don’t think it is a great idea. So I am not going to participate in trying to convince her. He won’t even go look at other options around town… but I think I am going to be considered the bad guy for not pitching his idea to Mom.</p>
<p>Not the first time he has pulled this – he used to try to get me to get my teenage niece to “behave” the way he thought she should back when they had grandparent visitation with her – but I was pretty sympathetic to her viewpoint, and thought he could tell her himself if he wanted a change. He wasn’t happy with me then, either. My brother (who lives in town) is on Dad’s side – Dad had him call me to see if I would intervene. This is not going to be pretty…</p>
