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I'm not sure where this goes as it's quite a complex issue. Mom is 80 and has some dementia. She's also been having chronic UTIs the last few years. Mom had to go to the hospital on New Year's Day with a bad UTI. Once released a week later, she went to rehab only to have another UTI. In the last 60 days, she's had four UTIs (or one they can't get rid of) and is now back in the hospital. The other issue is that she has a compression fracture in her lower spine causing her great pain. They found this by doing a MRI where she had to have anesthesia because she moved around too much when they tried it the day before. Since that time, she's been very lethargic. She sleeps most the time, has no appetite and crys a lot. We're now four days removed from the time she was on anesthesia for her MRI. The docs say her UTI is gone after three days of IV antibiotics. She was on morphine a few days due to the intensity of her back pain. She was taken off it three days ago. She hadn't eaten anything for five days until last night when she had a Ensure-like product and a popsicle. She still has no appetite. Can't talk (but babbles sometimes). She totally looks out of it for most of the time. We're not seeing improvement as fast as we thought we'd see. They won't put her in a back brace until she's more cognitive. She's got to eat more soon or they will use a feeding tube. She won't take her usual meds either (diabetes, cholesterol, blood pressure). Anyone have any thoughts on this? We're very worried.

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She's in pain from a compression fracture. Start out by treating the pain (patches, injections, kyphoplasty) and see if she comes back to baseline.

Dementia patients are notoriously bad at reporting pain.
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Jeff, how are things going with your mom today?
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Have they got the UTI's under control? Do you have a gerontologist on her medical team?
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Anesthesia is very difficult on elderly people and they don't often bounce back to where they were prior to the anesthesia. I think she'll need to be assessed for a new baseline.

And I agree with Barb. Get her pain under control. That can only help.
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I can tell you from experience, it can take weeks for anesthesia effects to be gone. Although you didn’t say what kind she had..I doubt it was general anesthesia but more likely a sedative like Versed. You should find out. Versed can really mess with the memory of elderly...I’m including my 65 yo self in that and refuse to have it.
If she is babbling have they assessed her for stroke? When my dad was on a narcotic for pain after falling and surgery he also was out of it. We need a bit more info. But agree that care conference is needed assuming she’s still in rehab or skilled nursing.
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I would not do the feeding tube at all. Once it is inserted, it can take a court order not to use it. Not for me! I myself don't want a feeding tube as it is the beginning of a cascade of interventions to prolong my life. When I quit eating, let me go! She may be at the beginning of dementia, but she's making the decision to refuse her meds. Listen!
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Thanks to all of you for your advice. I wanted to post an update...

Mom still barely eats or drinks. An IV is keeping her hydrated but they want to send her back to rehab today.

Her compression fracture has been painful but they have fitted her with a back brace. They backed off the strong pain meds and are now using Toradol which, I understand, is more an anti-inflammatory. She's six days removed from the morphine. She's not a candidate for surgery.

We tested her again for a UTI and it came back negative. We're a week since the anesthesia used for her MRI (I don't know which one it was but will ask). She's still very confused and sometimes hallucinates but, at times, carries on a decent conversation. It's almost like you can see a light come on in her only to dim again in a few minutes. She does things like fold and refold her pillow cases and rearranges the little table beside her bed. Lots of mood swings. She gets very angry and frustrated at my sis and I only to smile at another visitor.

Mom has a living will which states she doesn't want a feeding tube.

I've been reading a lot about palliative care and hospice. I think our first goal is for Mom to be comfortable before looking to rehab her back. If she's hurting, I can't imagine she'd have the will to rehab. And rehab might just send her right back to the hospital. She's much worse now than when she went in 11 days ago.

I also saw some articles about the late stages of dementia and she has most of the symptoms. Thanks again for all the advice.
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I would do some research on Toradol . Not meant for anything but short, like 5 days, usage. Also increases risk of stroke and heart attack, this drug should be banned.

Ask for a pain management specialist, there are lots of options besides morphine and toradol.
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Barb has already mentioned kyphoplasty, you need to ask why this isn't being considered.
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My grandmother went through a period where she stopped talking beyond a sentence or two, was confused (occasionally thought I was my mother) and stopped eating when her red blood cell count dropped too low. This persisted for several weeks after transfusions restored a normal cell count. She would drink/eat/swallow if you put the cup or spoon to her lips during this period so we never had to use a feeding tube. Eventually she completely recovered after returning home but it took several months.

My mother had some short term memory problems (but not any other issues) for about 4 years prior to having cataract surgery. Following the surgery, the short term memory issues became MUCH worse and she was eventually diagnosed with MCI (scored 26 of 30 on assessment with 27-30 being normal). Five years later, she's not any better or worse. Even though my mother had several prior surgeries without any issues, I think the propofol anesthesia was responsible for the sudden decline.

I hope your mother's situation is more like my grandmother's and she will just need more time to recover. Not only do older bodies take longer to recover from illness it also takes longer to flush medications out so the anesthesia (alone or combined with other medications she needs) could still be causing problems four days out for her.
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The doctor didn't think she could handle the anesthesia to have kyphoplasty. I do think I'll get clarification from her specialist. She's had three back surgeries over the last 20 years.
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I know of a gentleman who actually had hip replacement surgery without general anesthesia, there may be options available if they are willing to think outside the box.
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I'm curious about this also. My husband will have anesthesia in a few days for a gallbladder removal and I am worried about him bouncing back. This surgery has been on his mind and he is also concerned about it. He is 86 and he will have the surgery in 5 days. His dementia was mild but yesterday he became much worse in knowing me, his wife. Now I'm really concerned. Is the up coming surgery creating his mental state?
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Hi Jeff,
I really encourage you to seek a palliative care consultation. I am a Nurse Anesthetist and I can tell you that even the kyphoplasty will require sedation and the positioning for it is extremely difficult and painful. Sometimes less is more. And the treatments are causing more harm. Comfort care can even get you more days together, interventions can hasten decline.
Best of luck
Margaret
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Has your mother used quite a bit of antibiotics for the last few years I found with my mother-in-law that she had a UTI that did not show up in her blood test because her body was not fighting off the infection so the white blood count cell was not elevated but she was raging with urinary tract infection all along which caused all these symptoms of severe dementia. She stayed for one week in the hospital without antibiotics until they figured out that she did indeed have a urinary tract infection but at that point it became septic just saying that the elderly sometimes UTI that cannot be easily diagnosed because of a compromised immune system
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Jeff62: My dad had heart bypass surgery when he was 85 & he was a mess afterwards due to the anesthesia - forgetful, seeing/ hearing things, unable to eat or sleep. Characteristics very unlike him. It took about a month before he was himself.  You're mom's been checked for UTI (plumbing #1), but has plumbing #2 been assessed? Even if she hasn't been eating, she may be constipated which can have very negative effects on the elderly.
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Thank you all again for your responses. I'm going to try to answer as many questions as I can. It's helpful to think through this.

Mom wiggled so much during her first MRI they had to go with the anesthesia. I suspect there is no way she'd be still on her stomach for this procedure but it doesn't hurt to ask if options exist.

The first thing I plan on doing when Mom gets back to rehab is to ask for a care conference with palliative care the thing I am most concerned with now.

Mom had a slight UTI when going to the ER. She had three days of antibiotics and the urine test came back negative two days ago. The ER has missed UTIs before so will ask rehab to test as well.

Plumbing #2 seems all good according to the nurses.
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I agree with Margaret -- sometimes less is more, as in giving you both more quality time. And I too would call for a palliative care assessment.
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Morphine can make an elder quite lethargic and oftentimes hallucinogenic. She what her group of physicians say.
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Thank you for responding to my question about my husband having surgery for his gallbladder removal. He has gallstones and has pain after he eats. I made sure he didn't have fats in his diet but his discomfort after meals is getting worse. He has lost at least 40 lbs in the past 2 months so I believe it is necessary. I ran this all by his pulmonologist because he has pulmonary fibrosis and was concerned about the anesthesia. This past weekend his memory loss got worse but it cleared up this Monday and I believe it was the 2 hour pre-op on Friday because the up-coming surgery has him worried. I told him it was his decision and although my change in his diet worked, it no longer does so this Friday is D day. I think his reaction to the surgery and the anesthesia is going to be the same as your Mother but I don't see any other option. Can only hope now.
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Tperri123 ask the anesthesiologist what sedative they give for pre-op and be sure it is not Versed...this drug is not recommended for the elderly due to its memory impairment effects. Profafol is preferred over it. All anesthesia will cause memory issues in elderly that can take weeks to overcome. Just know this going in to it.
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It would be good to take the advice about palliative care, which is about comfort. It doesn't necessarily mean a shorter life than going the 'intrusive' way, just a more comfortable life for the time left. Do you and your mother really want her to live another twenty years with ever increasing problems and pain?
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Sorry to not have followed up on Mom but it's been crazy.

She was taken back to rehab on Monday only to go back to the hospital on Wednesday. The rehab told me they feared she was having a stroke (face droopy, very disoriented). She was rushed to the ER.

When I got there, I saw her state and I too thought she might have had a stroke. But, within an hour of being on an IV, she starts improving. Her tests come back showing she was dehydrated and has a slight UTI. She'd only been in rehab less than 48 hours after being on an IV in her previous hospital visit. The doc said dehydration does add to the severity of dementia but usually not to the levels we were seeing.

I call the Care Manager at the rehab and, sure enough, she'd been given a opioid for pain relief after I had spoken to her the day before saying that we needed to find alternative ways to relieve her pain as she had a reaction previously when given opioids.

Fast forward to now...

Mom is back in rehab. She is eating well. We have a lot of her favorite drinks now in her room. She was on Lasix (I think) because of swelling and we've removed her from that. We're treating the pain with Tylenol and another arthritis meds. Her primary care physician is supposed to meet with her rehab doc and a pharmacist to work out some pain relief options that agree with the long list of her other meds and Mom's reaction to opioids.

24 hours later back in rehab and all is good so far. I'll follow up once I get information on the pain meds they recommend. Thanks to all for the advice.
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Jeff, it sounds like a lot has been happening with your mother. I know it can be so stressful.

My LO fell and suffered a spine fracture in the AL, several years ago. Her doctors said she was not a candidate for the surgical procedures either. She was in a wheelchair, but, could walk a little and transfer, so we were afraid to give her anything too sedating. So, she took Tylenol and was also placed on Cymbalta at that time. Cymbalta is actually for anxiety and depression, but, ALSO FOR PAIN. It really helped her on so many levels, including the pain from the spine fracture. It never impaired her alertness at all.

MY LO's dementia kept her from engaging in physical therapy. She just wasn't able, but, she did heal and after a few months months, her pain did subside. She adjusted to her wheelchair just fine and scoots around on her own. It wasn't the spine injury that put her in the wheelchair. It was the dementia.  

They prescribed a brace for her to wear during the day, but......I don't think they understand how a person with dementia isn't likely to keep on a brace or properly wear it.  She didn't tolerate it at all. It was very uncomfortable and she couldn't rest in it. Plus, the AL staff had to constantly adjust it, since she would wiggle around in it.  When, I explained it to the doctors, they said, don't worry with it.  You would think they would be aware of these things in advance.....anyway.  I hope your mom's works out better. 

I'm not sure what lies in store for your mom, but, I would encourage the comfort care. If we had it to do again, I'd avoid the hospitals and adjust my expectations to my LO's abilities.
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If she is not eating, why push her meds? Does she have a favorite food like sugarless chocolate pudding, fruit from a can that is packed in water, even a milkshake made with ice cream, milk, strawberries or a banana. I really don't think that she would be getting that much sugar if she is not eating. My husband just had his gallbladder out and had anesthesia. All he wanted to do was sleep, totally confused especially after taking the pain pill twice a day with codeine for 4 days straight. I weaned him off of that and gave him an Aleve and that worked fine. He is 86, still confused somewhat but not as bad.
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Quick update and nothing to do with the original topic but just found out Mom has C Diff. I had no idea what it was so just now researching. She can't catch a break.

She'll be isolated to her room for as long as it takes to get rid of it. We'll have to wear protective clothing to just visit her.
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Jeff, so sorry to hear this! Hoping for the best for you and your mother.
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Jeff: It's not uncommon for elderly patients to p/u C-Diff while in the hospital. That's right-all visitors will have to be gowned.
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It's been a couple of weeks so wanted to update anyone following this thread.

Mom's situation isn't improving. She has constant back and stomach pain so is doing less and less rehab. She has mixed days mentally.

I had a great conversation with her on Friday—probably the best I've had in weeks. The next day, she was confused and not making any sense. I've learned to cherish the good days.

Her C-Diff continues. We were hopeful it would be gone by now. We assume the antibiotics used is part of her stomach issues. She continues to have diarrhea too though is eating and drinking well.

Her time in rehab ends mid-month. They're shift her to nurse care which is $7k a month. Her doctor mentioned hospice might be good at that point to help her manage her pain.

Does anyone have experience with hospice in a nursing home environment? Thanks.
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Mthr has been on hospice in the memory care home. The home provides her meals and the regular services but hospice provided someone to bathe and dress her and put her to bed at night. She had a nurse come every other week and her meds and incontinence supplies were provided. Only things that made mthr more comfortable were done - when they suspected she'd broken her arm, out came mobile xray. With your mom doing poorly, she may not recover from her decline. Personally, I'd rather go on to the other side than to linger, and hospice allows people to pass naturally. They won't try to revive her with CPR and painfully break all her ribs in the process. I think hospice is a good choice.
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