Looking for help/advice

udpt82

Hi,

My MIL has moderate dementia and lives in a MC nearby.  I hope that someone can offer advice and suggestions.

• I may be wrong, but it seems like most people on these boards are caring for their LOs at home.  Although there are many overlapping issues, I am wondering if there is a different site I should look at for those who have LOs in facilities.
• My MIL has been more anxious and confused the past few days and so her Zoloft is being increased to 100mg.  Since other things can cause similar symptoms, such as a UTI or dehydration, how do we distinguish whether it is progression of the dementia or another issue?  Should we push for a urine analysis each time this happens?
• My MIL is still able to use a computer for emails, but is sometimes sending disturbing emails as late as 1:00am and other times sending loving communications.  She also leaves paranoid, anxious, voice messages (mostly in the evening when sundowning). The director of her unit has commented that her room phone and computer may be keeping her head whirling.  Since she has many family members out of town, we really don't want to remove these methods of her being in touch with LOs.  Has any else experienced this and how did you manage it?
• I know it is important for families to be involved and present when their LO is in a facility.  How much should we be questioning?  We know that she is receiving the care she needs for safety, medicine management, daily care and meals, but their communication is not what we had hoped for.  How much are people on top of the staff for information and care questions?
• I am curious who/where people turn for advice to navigate this sad journey.  I know every person with dementia will experience different symptoms and progression, but advice would be helpful.

Any advice or recommendations would be greatly appreciated.

Thank you!

MN Chickadee

Many here have their LO in a facility. It’s always a mixed bag of contribution so it may just be threads that happen to be at the top right now are those caring for people at home. But there is definitely a wealth of information here about people with loved ones in care settings. I lost my mother quite recently after she was in a facility for 3+ years. Two facilities actually.  There are many others with relative experience. 

Your question about UTI, dehydration, and what is just normal disease  progression is the constant thing that dogs us. There is never a clear answer and that’s what makes decision making and this disease so hard. It always feel like we are not doing something right or missing something. We do the best we can with the information at hand. If she has a change in behavior or condition that seems sudden, say over the course of a couple days, I would say a UTI check is very warranted. Some PWD have specific but odd symptoms that come from UTI. Usually in a facility they can collect a urine sample easily and on site so it’s not a big deal to order one. My mother always had falls when she had a UTI. I started just asking the doctor to order one when she fell. There was a time when she was tested very often and it wasn't a big deal. 

Many people find that eventually technology needs to be faded out. Causes more trouble and anxiety for all parties than it’s worth. Most people have to remove the phone eventually.  It’s a difficult but short-lived phase where they understand how to use it but not the social implications. And then the skills to use it go and cause new anxiety. Some people find an Amazon echo or similar where you can drop in on her is better. If the family out of town truly wants to stay in touch they can likely call the facility’s phone and they will bring the phone to her room or find other ways to stay in touch. Cards, gifts and letters can be mailed. Having the phone or computer causing significant issues is a common entry on these boards. 

If the care seems good I would give them a chance. Especially right now in our world of Covid places are very short staffed and are not living up to the standards they would have two years ago. Not ideal, I know.  It’s always okay  to question. It’s always okay to advocate. A good facility will welcome your participation in her care. If it seems like the place has potential make friends with nursing, make friends with the aides. Bring treats, don’t jump the chain of command if you don’t have to, start with the ones doing the hands-on care and move your way up. Sometimes some minor tweaks and careful words on your part can be enough. In the end if your gut tells you it isn’t ok then a move is worth it. 

Most of my guidance, validation, practical  advice and cathartic release came from this forum and in person support groups via the Alz Assoc. Also books and youtube videos. Not friends, because they have not been through it and couldn’t possibly understand. And not doctors, unless they have been through it with their own relative. Of course there are many good friends and good doctors along the way but unless they have personally been through it there is a certain element of naivety regarding the colossal responsibility, sadness, grief, and difficulty around care giving. 

May flowers

Welcome! I have done both, MC and home (currently at home) and the folks on this board have been so helpful in both circumstances! 

I would insist on a UTI test. When my FIL lived with us, whenever we noticed a sharp decline or confusion, we had a GP who would prescribe antibiotics for him, even if the urinalysis was clean too, just because he would start having issues before things would show up on a test. His fall which happened in January, he was diagnosed with a UTI at the hospital. He was having odd behaviors at the MC beforehand and we asked for a test, which never happened and a PT evaluation which never happened. 

I wish we had been more persistent. Like many have said here, sometimes you have to be a squeaky wheel. Like MN said, these places are all stretched thin right now. I know the nurse at our facility was doing her job and that of caregivers and others who weren’t doing their job. It’s a real mess.

At one point the computer became such a burden for my FIL. He last used it when he still lived at home, and we got calls day and night that it was broken (it wasn’t) I second the Echo. You can set it up to drop in, which puts you in charge of communicating.

We had a good MC experience (it went south after a change of management and loss of a great nurse and caregivers), and would have done it again in a heartbeat. 

harshedbuzz

udpt82 wrote:

• I may be wrong, but it seems like most people on these boards are caring for their LOs at home.  Although there are many overlapping issues, I am wondering if there is a different site I should look at for those who have LOs in facilities.
  
  Many people who post have a LO in a facility. Some of us provided care in the home for years before placement, which might make Team Home seem larger than it is as these folks can- and do- answer questions about either scenario from experience.
  
• My MIL has been more anxious and confused the past few days and so her Zoloft is being increased to 100mg.  
  
  Since other things can cause similar symptoms, such as a UTI or dehydration, how do we distinguish whether it is progression of the dementia or another issue?  Should we push for a urine analysis each time this happens?
  I would err on the side of testing for a UTI whenever there is a change in behavior especially if she's ever had one before. 
  
  It can take about a month for an increase in an SSRI like Zoloft to show a benefit (or not). If her sundowning is worrisome to her, it might be time to engage a geriatric psychiatrist for medication management. At a certain point some PWD need a low dose of something like Seroquel or Risperdal. 
  
  
• My MIL is still able to use a computer for emails, but is sometimes sending disturbing emails as late as 1:00am and other times sending loving communications.  She also leaves paranoid, anxious, voice messages (mostly in the evening when sundowning). The director of her unit has commented that her room phone and computer may be keeping her head whirling.  Since she has many family members out of town, we really don't want to remove these methods of her being in touch with LOs.  Has any else experienced this and how did you manage it?
  
  This is super common. Many families elect not to provide wifi or a phone in their LO's room. You could try slipping the computer into airplane mode to prevent her sending these emails. Are the OOT family actually contacting her? This often drops off over time, so it might make sense to call them from your phone when you visit instead. 
  
  
• I know it is important for families to be involved and present when their LO is in a facility.  How much should we be questioning?  We know that she is receiving the care she needs for safety, medicine management, daily care and meals, but their communication is not what we had hoped for.  How much are people on top of the staff for information and care questions?
  
  It's best to visit regularly and check in the aides when you do. If you have an actual concern or question, one family member should approach the DON for a phone call or short visit. Dad's facility was a 46 bed free standing MC. It was pretty easy to swing by the DON's office when coming or going assuming he was busy with someone else. But do keep it to one family representative.
  
  
• I am curious who/where people turn for advice to navigate this sad journey.  I know every person with dementia will experience different symptoms and progression, but advice would be helpful.
  
  Here. My mom also joined an IRL Alz support group that was just awesome. 

Any advice or recommendations would be greatly appreciated.

Thank you!

tramey50

Hi, my Mom is in MC and I had some of the same questions you have.

With Covid all the homes in town are having terrible staffing problems so just getting Mom into a place was a nightmare. I often feel like the memory care home is the customer and not me. I do pick and choose when to push an issue, and like others said, I visit often, am friendly with the caregivers, and bring them cookies. They are mostly hardworking and understaffed.

Mom was getting UTIs and after one turned septic her doctor put her on a daily low dose antibiotic. She hasn’t had a UTI since. It is so hard to know when it’s a UTI or part of the disease. I push for a test when she seems to be ‘off’.

I use this forum quite a bit as those going through it really understand. 

Take care, Tracy