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Mom has had several problems this past year that have in my opinion sped up her dementia. Starting last year with H-PYLORI that caused her to seep blood from her lower intestine. Less than a year later she had a UTI so bad it went septic. This last was a week ago. She's in a rehab because even if she ends up doing long term I want her to get stronger. They're concerned with a few places that are close to causing pressure sores and turn her every 2 hours. I understand the need to do this but they call her name until she responds then turn her I guess it's policy but she hasn't slept more than two hours at a time and has become unresponsive to me or anyone basically. She's only been here 5 days. She was at the hospital for 9 right before she came here and I had high hopes for her. The first two days she seemed to be getting better now she's not even acknowledging me.

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Pressure sores from sitting / lying in same position too long is an ongoing challenge for the elderly.
Especially if elder is incontinent - wet from urine/feces breaks down the skin; makes skin weak -. leads to sores or makes pressure sores much worse. Goal is to keep skin clean & dry w/ proper diapers, ointments & antiseptic powder to promote skin to heal. I also give mom hydrated collagen peptides (unflavored powder) mixed in with her protein shake to help her overall skin.
My mom suffers w/ dementia (15+ yrs) & is incontinent. I cared for my dad & mom 24/7 for 7 mos until dad fell & I had to place him them in licensed board & care private residence...mom followed 'cuz she asked for dad everyday / & nite. Max 6 guests in home w/ alternating 2-person caregiver teams working 24/7 (4) days a week. Teams rotate. Each team cares for my mom; her diaper is checked / changed every 2-3 hours & at first sign of any wound (always on her butt; where she sits) they lie her in bed (off her butt) avoid pressure in area....
Alternate her lying on her right side to left side accordingly until her wound is better. Hospice nurse checks my mom's vitals / wounds etc 2xs/ week. Nurses
/caregivers should know what to do & should make rommendations to you...ask questions. I suggest being "very proactive" in your loved one's care. Ask questions & drop by unannounced to check on staff, overall status of things in household & quality of food, etc.
Everyone's comments are great; wishing you courage & strength. This is the hardest job I've ever faced; I lost over 20 lbs & feel like I aged 10+ years from all the unforeseen pressures. This experience is a wake up call to all us baby-boomers to think & plan ahead - Start conversations now w/ your spouses, children, friends about aging, illness, elder care & your eventual death. Let's stop or minimize the horrible "shock of reality" when one steps into caregiving. Most of our parents just weren't prepared mentally, physically, emotionally, spiritually & sadly financially.
FEAR often drives them to argue, be controlling & demanding instead of being gracious in accepting help from loved ones & strangers. I pray to keep learning & that I choose a different path for myself than my dad....he made it very hard for anyone (family / medical / friends / caregivers) to help him in his last days....he was just afraid & angry.
May God's peace & strength be with each of you & your loved ones.
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Getting her a pressure mattress is imperative. Also sepsis is not to be taken lightly.
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The alternating pressure mattresses may be great but I don't think it's the holy grail you all are making it out to be. Up here in the sticks they are uncommon and I'm 99% sure nobody in mom's nursing home had one, yet pressure sores were not a problem there. In my opinion having staff coming in to check every couple of hours is a good thing, especially among a population that can not summon help themselves. And it's not like they are shouting and shaking you awake, it's simply "hi mrs xxx, we're going to turn you now, OK?", which is much more repectful than simply marching in without announcing their intentions.
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JoAnn29 Mar 2019
There is a debate whether the mattresses are needed per my daughter. Her facility still uses them.
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Tell the her Doctor, it is imperative that she gets an Air Mattress before her sores get deeper and infected. Also, look for an adhesive called second skin and put it on the effected area.

You can have the doctor order Skilled Nursing for her 3 or more times a week at the home. I have a Urinary Catheter and have skilled nursing at the moment. My nurses come every week.

Good Luck and God Bless
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I would bet there is no good reason why they can't have an alternating pressure mattress. It is very standard they don't take much room once it's on a hospital bed anyway. Do insist.
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When it comes to our LOs and even ourselves, we have to be proactive in their care. If you ask a question and it just doesn't seem right or you get the feeling they are just placating you, ask another professional. Just because you or LO is in a hospital or Rehab doesn't mean you have lost the ability to get your own PCP involved. I hate that they don't consult with ur PCP anyway. Who knows you best. Make sure you know what meds your LO is on. What operations/procedures they have had. If they are transferred from a hospital to rehab, check their meds and ask questions if something has been added or subtracted.

My Mom was on thyroid meds for Graves desease, everyother day. While in the hospital the Dr. took it upon himself to stop Moms med without telling me or consulting with her specialist. I found this out only after a care meeting at rehab (which Mom was in at least 10 days before I had one). I was furious. I was told it was stopped because her numbers were good. Her numbers were good because she was on the med.

My Uncle was in rehab because of a reaction to a lung med he had been put on. He almost died. My Aunt was a stickler in asking what he was being given. My Uncle wrote down every medication he was given. When the nurse came in to give him a shot, she was asked what she was giving him...it was the same med he almost died from. Seems they don't read the info from the hospital.

I had a paper with all Moms meds listed. Then I listed all her procedures/operations and dates. Then I listed all her doctors, their specialities and contact info. Three of which had privileges at the hospital Mom went to. I was waiting for Mom's discharge when I was told they were waiting on a Neurological consult. I asked who had they contacted, it wasn't my Moms Dr. I asked why they didn't call her Dr. in since he has privileges there.

You have to be your own and LOs advocate. I am lucky. I have an RN in the family so when in doubt, she gets called.
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If I was woken up every two hours, I would be a snarling, angry mess! I've been through that in the hospital with pneumonia. I suggest following the advice from the others here about the alternating pressure and air mattresses. Sleep deprivation is real and can have devastating effects.
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NeedHelpWithMom Mar 2019
I’ve wondered about that too. Seems like it would be hard to wake up every two hours.
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Sparty, get the DON on the phone right now and TELL HER to call the doc to get an order for an alternating pressure mattress!
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Why don't the nurses just turn her without calling her name or trying to wake her? I have had a somewhat similar situation with my mom. Who wants to be woken up every 2 hours in the middle of the night? Not me. If they can just reposition/roll without waking her, that might help the situation.

I totally sympathize. With all she's been through, she would probably benefit immensely from some peace and quiet and a good night's rest. Please continue to advocate for her. Trust your instincts. You are doing a great job!!!
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Isthisrealyreal Mar 2019
I think the concern is that the patient will wake up during the turn and be frightened.

I totally understand that, it could create terror for people and that would be very cruel to anyone in this situation.
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I would question why they are not using an air mattress. They should have them. If you have talked to the DON then talk to the doctor incharge. Where the sores there when she was admitted or only since in rehab? If these sores get worse, that is on the NH. A woundcare nurse should be looking at them.

If you don't feel Mom isn't doing well in rehab, have her discharged. Ask the doctor to order in home therapy. Like said Dementia patients do not do well out of their element. If she goes LTC, they do therapy too.
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The facility should be able to provide the air mattress. You may have to get a doctor's order. A proper cushion is also needed If she is placed in a wheelchair. If she is "unresponsive", your mother is not a candidate for rehab right now.
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There are two things that can have severe consequences in dementia/alzheimer's patients. Urinary infections and being moved from place to place. Both have happened here. Your mother has been taken out of her comfort zone and it has probably caused a shutdown. This same thing happened with my own mother. My recommendation is to contact Hospice and let them evaluate her. Contacting Hospice is not a last ditch effort. Her Medicare will pay for it and they have a lot of pull with hospitals/nursing homes/rehabs. As you have probably already realized, getting her doctor to get involved in nursing home or rehab care is impossible. The rehab we had my mother in was a beautiful place but their caring practices were horrible. Make sure this is not the case here.
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An air mattress, alternating pressure mattress might help, it would eliminate the need to re position her every 2 hours.
The last one that I/we had for my husband was one that had air chambers and they would fill and release and you could set the control as to how you wanted it to do that. It took a bit of getting used to as it was a bit noisy. The first mattress we had was a memory foam with air flow so that also relieved some pressure but not as much as the last one we had.
And the nice thing about the last one is because of the air chambers it did make moving and changing him easier and I hope more comfortable for him.
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Being woken up is part of old age, because they are no longer able to turn themselves, and the skin is sooo thin. At least they are doing their jobs and turning her.
It's also very confusing, and exhausting to be moved from place to place...
Just wait it out, see what she does. She may be getting ready to leave...or not. One just never knows.

Be at peace.
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Dementia can come on as Fast as the wind. With it already Beginning and maybe Progressing, It is in God's hands now....
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Does she have an alternating pressure mattress? That might be less intrusive; ask the doctor to order one.
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SparkyY Feb 2019
She does, they let her keep the one she was using at the hospital but Westgate (the nursing home she's at now) told me I couldn't bring it in. No explanation.
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Hospitalization itself is dangerous for people with Alzheimer's since they are confused already even with a home routine; strange sounds, sights, people in a hospital has been known to cause delirium and they will not sleep even for days. It sounds like she is already bed-bound if she has to be turned every two hours.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3556489/

I have my mom on hospice due to end-stage Alzheimer's disease. I work very VERY hard to keep her mobile. She had a few bouts with UTIs one with a 101 fever which I called 911 (I told hospice I called them). I told the ER doctor I will NOT hospitalize her because that is risky in itself for someone her condition. They gave her a bag of normal saline, a dose of cefepine in the vein, and sent home on Keflex. She got well pretty quick--at least the UTI went away. and she stayd at home.
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In my experience it became so routine that I think mom barely noticed - I think that once they've reached the point where they can't make even the little adjustments that relieve pressure spots they tend to be mostly sleeping anyway and easily drift back off.
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cetude Feb 2019
If a person suffers Alzheimer's disease, they can be wide awake and never make any kind of adjustments due to altered senses. That's why they get pressure sores. Never assume they are sleeping.
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I’m so sorry. It must be very hard to see her so out of it. I know the pressure sores would be awful to heal. Can you ask to speak to her doctor in case there are alternate options from waking her completely? How often do they evaluate the pressure spots? Are they improving? It’s probably a catch 22 on sleep vs turning. Both are so important.

How are her vitals? Is she taking fluids? Getting up for the bathroom? The therapy might be just too much for her now. I would try to talk to the doctor.
Hugs
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SparkyY Feb 2019
Thank you so much for letting me know there may be other options I hate feeling powerless. Just to note she hasn't been diagnosed with anything like Alzheimer's yet but it's fairly obvious she's not functioning at normal capacity. I've been told that since she's already showing signs of deminished capacity it's too late for a proper evaluation.
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