Fall on vacation, broken bones & worse dementia

JMack88

So my mother owns a house where she and my father lived before he passed away. She insists on going there every summer since we convinced her winters are too harsh in lake effect snow, and until this year we had no problems because my sister is a school teacher and goes with her every year.

Unfortunately this year mom had a fall at her summer place. She broke her shoulder and a cheekbone. It was a very bad situation for the first week. I was staying with her while my sister had to return and do mandatory teacher continuing education.

I got her to the hospital in an ambulance, and we stayed late into the night while they dealt with her in the Emergency Room. In the end, they kept her over night so they could get her re-hydrated and observe her. I got to take her home the next day, however between the pain, the pain medication and her dementia which was relatively mild pre-fall, she was extremely disoriented and confused. Although she spent a lot of time sleeping, trips to the bathroom were difficult. She was unsteady and a danger to herself due to the high likelihood of her falling again if I wasn't by her side. However, she couldn't remember to call for me, and I couldn't be by her side 24/7 as I also need sleep and bathroom breaks. I did get the follow up appointments made with the specialists the ER said to, and managed to get through the week with only 2 major issues. Both the same - she removed her sling and put on a long sleeved robe (how she managed that with the intense pain I have no idea). I had to remove the robe, put her back in the sling while she was crying and not understanding why I "hated her" and "wanted to hurt her." It was emotionally extremely painful for me to see her in such pain and being accused of wanting to hurt her made it even more difficult for me.

My sister arrived and we both cared for mom until a cousin could come up and relieve me so I could report back to work.

The pain meds caused one other problem. Severe constipation. This caused a second emergency room visit by ambulance, for treatment. She was so upset that my sister and I insisted on helping her in the bathroom after that.

Mom doesn't want to "bother" my sister and me so she tries to do things herself, and she's so quiet it's impossible to catch her at it using a audio baby monitor. We've tried bed alarms before and the ones in the bed aren't very helpful either. We're looking into the laser ones that get tripped when feet hit the floor, but aren't sure if they will help.

My sister is deeply afraid that this will be the final straw that means we'd have to put mom in some kind of 24/7 care instead of being able to take care of her at home. While I'm not so sure, the doctors have all said it was the shock and pain that have made the dementia worse and they said it would go back to where it was, once the pain recedes.

In any case, we will have weeks of medical appointments, physical therapy appointments and other difficulties coming up as we navigate the waters to get her well physically.

I needed to vent to others who understand. Additionally we now need to figure out if a 300 mile drive is going to be possible with her in her current condition, to bring her home to where we have better medical access since the summer home isn't really the best place to care for her under the circumstances.

ButterflyWings

Hi - what a stressful and traumatic experience for all of you. A couple of things I may suggest:

1.There are ambulance companies that will transport your LO 300 miles rather than a private car.

2.Can you bring in a home health aide to sit with her overnight and part time during the day? It really sounds like a dangerous situation for her, and as you say, terribly stressful and not sustainable for your family who has to work. My DH was line of sight for a long time and is now mandatory within arm's reach due to fall risk. So, I get it. Sleeping with 1 eye open, bathroom breaks are lightning fast when he sleeps or an aide is here. Period. The Dr. could provide a referral for your respite or ER rehab aide plus PT, OT, etc. Get all the support she is eligible for, for her safety.

3.Based on her age (*edit or actually that doesn't even matter), would you consider home hospice care as well, temporarily? It has been a godsend for us, and many. Hospice is comfort care and seems like with her injuries and the need for more supervision and support, she would likely qualify for hospice right now. No harm in having her evaluated.

With PWDs, hospice is not a 6-month life or death sentence unlike the stereotype. It simply brings wraparound services to your home in situations where there are severe medical needs as in a recent downturn (like her ER visit and injuries) and an underlying terminal diagnosis, even if unrelated to the emergency. Dementia is why my DH qualified for home hospice after a 14 hr ER nightmare -- it has been almost 2 years now with weekly nurse's visit, CNA, supplies-toiletries, equipment, meds delivered and 24/7 on call support for comfort care. All medicare or VA covered if your LO has that insurance.

When her bones heal, and she improves, they will discharge her from hospice. In the meantime, she and you get the level of medical monitoring and caregiver support that seems to be needed right now.

M1

I am also sorry for your dilemma. Was it made clear to you why inpatient rehabilitation was not an option? Was it even offered? Although it can also be problematic with dementia, you might need a sitter for her there as well, but at least she would not have to travel for physical therapy appointments. At the very least, I would see if you can now insist that she be offered home physical therapy.

Sadly, there is no guarantee she'll get back to baseline, we can only hope. Welcome to the forum and keep us posted.

harshedbuzz

You've already gotten some great advice.

Unless you are able to stay with her 24/7 until the bones knit, I would use medical transport to move her back home. My aunt hired one when she moved her sister from ME to MA when she took over as guardian.

I think sometimes falls and disease progression are a chicken & the egg situation. You see progression after the fall but it's very possible it was progression that caused the fall in the first place.

My favorite ER doctor (my BIL) claims the opposite of yours. He thinks the pain of a fall & break often brings a temporary lucidity in the elderly (and PWD specifically) that fades fairly quickly. My aunt never got back to her baseline after the hip fracture and could not recall being injured- so she would attempt to get up from bed without an assist and would remove the soft cast on her broken wrist. She did go to a SNF after, but they insisted family provide a 24/7 sitter because of the level of care needed.

I would focus on getting her back to the area where you and your sisters live. Perhaps you can cobble together 24/7 care between yourselves and a few aides for a while you see how this plays out. In the meantime, I would research MCFs in your area is you won't be moving mom into one of your homes.

HB

mommyandme (m&m)

You might try a camera that will alert to your phone with sound and/or movement. We used Wyze Pan Cams which were only about $40 each and user friendly.

JMack88

Thank you everyone for the very helpful comments and information.

The hospital did arrange for homecare nurses to visit twice a week, but no one offered us any "sitter" or "overnight" services. Since we're planning to move her back to Maryland from Pennsylvania, it didn't seem like a good idea to go through the process of starting that only to end it after such a short time. Maybe hindsight will make that seem like a bad choice. So far once we had two family members on sight the time has been able to be divided so she has someone sitting with her all the time.

Once we get her to Maryland we're working on setting up all the necessary things to make this work so she can stay at home. Unfortunately I don't know everything or the best ways to do some of these things. For instance, we just discovered that we could get durable medical equipment via Medicare. Wish we'd known this when Dad was sick with Multiple System Atrophy. My sister and I are learning as we go.

loveskitties

Yes, you can get durable medical equipment via Medicare, however to qualify you must have a physician write a prescription for it. It will likely need to be one in Maryland since that is where she will be. Can you get the medical records from PA to her PCP in Maryland? That might speed up the process.

The only time you don't need a prescription is if the patient is accepted into Hospice. Then the Hospice organization will take care of the process for you.

JMack88

I wanted to follow up on this post.

Kudos to the Jamestown, NY, Lincare. Mike there was able to work with the doctor in Sugar Grove, PA, and got us a lightweight transport chair that we used during the trip back to Maryland from mom's summer home. We will probably use this whenever we have to move mom distances she feels too weak to walk. Medicare covered it as durable medical equipment. Mike actually was trying to get us cushions for the chair, but there simply wasn't time prior to us leaving the area. We never asked for cushions so he was going above and beyond.

Now that we are home in Maryland, we have follow up appointments scheduled with her primary care physician, an orthopedic doctor, an ENT, and physical therapy.

My sister and I are still taking shifts so someone is with her 24 hours a day, 7 days a week to keep her from trying to get up and move around on her own potentially causing another fall.

Mom's cognition is better as the pain in her shoulder fades as it heals. However, it's still quite a bit worse than it was before she had the fall.

We have a whole other set of issues ahead of us as we try to navigate who will take mom to all these follow up appointments including 3 day a week physical therapy.

We also are trying to figure out how to deal with her at night. The current situation with each of us sitting up half the night with her is not sustainable especially once my sister's school is back in session. We both need 8 hours of sleep a night to function long term. My sister has the creeps about the idea of letting a total stranger into the house at night while we're all asleep.

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ButterflyWings

Home hospice is a very good, (even temporarily), option to consider. It won't expedite her end of life, and yes they are strangers, but very vetted, trained, bonded, insured, and skilled. Just suggesting again you may want to have her evaluated by a local hospice team --while she is in a more compromised condition, this is the time to use or at least consider, everything in your toolkit.

Equipment, supplies, meds, and helping hands (visiting nurse, CNA for hygiene and bathing, respite caregiver for a few hours while you all sleep) are all part of a hospice team which supports with comfort care during this period while her injuries are healing.

Congrats on accomplishing so much important and complicated stuff already. It is great that you and your sibling are teammates in this way. Many families (mine) do not have that level of cooperation, some are awol and even some (ours) unfortunately pull in the opposite direction.

pookabera

Hi! I've found coordinating home health services and getting a "care team" together to be relatively difficult where I am (I'm assuming there's a learning curve involved, and since this is my first go-around it's more difficult, hoping it gets easier!)

I wanted to respond to your concerns about your mom's baseline: my dad (83) fell and broke his hip in June and was fully delirious in the hospital (seeing bugs, asking over and over why we were there, he kept asking if the new bone was coming from a dog, and then if we were taking the dog home, and then after surgery kept asking about the dog -- all very odd and very disconcerting changes to his baseline).

It's August now and he's finally back home - I do think there have been changes to his baseline, but the major dips in cognition and recognition have levelled out. I don't know if he'll able to walk again (this happened with grandmother when she fell and broke her hip after her Alzheimer's had progressed -- she was unable to relearn how to walk), but I've read that hospital delirium can last longer than you might expect.

Jo C.

NOTE: Medicare covers P.T. in the home when physician ordered. That would keep you from having to take your mother out of the house for P.T. sessions which is hard on you and even harder on your mother who is having significant pain. I personally would simplify and not have appts. that are not absolutely necessary; it is too much for her and also for you and your sister who are already in a bind.

It appears your mother is not a Hospice candidate at this point. Hospice does have bath aides a couple of times a week, but does not provide the on-site 24 hour care you have been providing. Hospices have significant difficulty finding people to be volunteers, but for those Hospices that do have volunteers, they do not do their volunteer work at night; they visit during daytime hours and the time they can be there is limited due to the demand for them for multiple patients. Some hospices have volunteers that can visit the patient and family for a couple of or few hours in a day or a couple of days in the week; they can perhaps run an errand or assist with other small things; they are mostly there for companionship visitation support for both family and patient and can at times, if willing, sit with the patients as a companion while the caregiver takes a nap, but they are not part of the patient hands-on care team and they are not licensed to do hands-on patient care needs.

The issue you would have, is that Hospice is only for those with a life declining condition leading to death which dementia is one such diagnosis- BUT there is strict criteria to be met. Medicare states the person must fit definite (difficult) criteria and patient has only six months to live (which is variable in dementia), and no heroics or life sustaining care are permitted and no hospitalization is permitted in this sort of circumstance except in the rarest of circumstances when Hospice cannot relieve a condition in the home setting which is most often intractable terminal pain unable to be relieved with narcotic pain meds in the home setting. Treatment would be only for comfort care inside the home and not full rehab. Your mother appears not to be Hospice qualified at this point; but depending on circumstances and family wishes, that can change in the future.

Now; IF your mother was admitted to an acute medical center for three 24 hour INPATIENT days for all of those three days, she would qualify for transfer to a rehab setting; but those qualifying days are necessary first. If your mother had been an inpatient for those three days in the other state, she would have 30 days in which rehab could be ordered for her and be accepted by Medicare; but not one minute over those 30 days. If she goes over that, one must have another three inpatient days in the acute hospital again. One must be cautious that all three days have been coded as inpatient at a hospital; some of them may have the patient listed as "outpatient" for one or all of the days and that would not be accepted by Medicare for rehab criteria qualification.

It is complex. Having someone come in appears to be the answer right now if family can afford it and be willing to do so. Otherwise, the other options are for NH placement or continuing on as is. Sometimes family Members will take Family Leave which does not have to be taken all at once, but that leaves one without income for that period of time.

As for the constipation - please have the primary MD inform you of what he/she wants to have used to keep this from being a problem; it is dreadful for the poor patient. Constipation is not only not "going" for a number of days; it also means that the stool is as hard as cement and will not pass no matter how bad the patient needs to do so and tries hard to do so. It is truly awful for them. No amount of prunes or other such items helps much with narcotic pain med constipation. Your doctor may prescribe stool softeners and even a laxative that is acceptable for your mother and they can only be used for a certain amount of time. Increasing fiber in the diet, etc. can be somewhat helpful; but it is not the entire answer for those awful meds inducing such a scenario. Important to keep this under control and get your mother off the pain meds as soon as possible if Tylenol or whatever the doctor recommends can pretty much relieve the worst of the pain or discomfort.

You have been doing an amazing herculean job of care and getting her home again; now it is a matter of what you and your sister are willing to do for a limited period of time while your mother heals. I also wonder if there may be family members who would be willing to come in and sit permitting you to sleep - even if it needs to be paid. Caveat: Even paid sitters can fall asleep when they are in place at night; so keeping an alarm will continue to be the best practice.

Let us know how it is going; we will be thinking of you.

J.

ButterflyWings

Respecting Jo C's vast knowledge and experience as a practitioner, my 2-year experience with in-home hospice gives me a different perspective on one item above.

I would have your LO evaluated for in-home hospice by a local provider or 2 if needed. Can't hurt. If she doesn't qualify, so be it. But she might. The pain, caregiver burden, recent hospitalization, recent move, progressive terminal disease, bones that need mending...In our case, the hospice conditions were met after DH's ER visit and fall (no fractures but lingering major fall-risk and recurring UTI). Hospice has been our saving grace. The weekly nurses' visit to monitor his vitals and overall condition, CNA visit for supplies and any personal care/hygiene, and equipment (hospital bed, rollator, wheelchair, oxygen on-site) all have been needed at one time or another and were right there at hand. It would provide such a help and professional eyes and hands-on to give you added local support right now, as a bridge to whatever comes next.

For your situation too, the hospice approval activated 30 respite days (up to 6-hours at a time if used in-home). I don't know what hours you and your sister work, but if it is overnights that are needed, you could use an in-home respite caregiver overnight, at least for 30 days which buys you and your sibling (and PWD LO) more time.

JMack88

I want to thank this community again for all the extremely helpful information! My sister returns to work soon and we hope to have some solutions in place. The ENT who was evaluating her broken cheekbone and the severe sinusitis that was an incidental finding says that the cheekbone is healing fine and we don't need to be concerned about the sinusitis. So for now she's cleared by the ENT. My sister took her to the ENT and didn't remember to ask about her slightly altered mental state after the blow to the head, or about something that bothers me - her hearing seems to be worse after it.

We also saw the Ortho specialist. The X-rays show mom's shoulder is almost healed. The doctor recommended taking the sling off for some time every day and getting mom to do some mild exercises with the arm at home. He also prescribed 6 weeks of PT 2-3 times per week. That's going to be difficult for my sister and I to schedule since it's so many days a week. But we have a good team at Focused PT in Silver Spring, MD, where I've been going to PT for my back pain, my cousin worked there after graduating with PT from college, and my other cousin went there for his knee. So hopefully we will not have problems with the actual PT sessions. Honestly keeping the sling on her has been a major undertaking. She keeps sliding it up to her elbow because she wants to use her arm and it's not doing her much good as far as I can tell at this point.

Mom's eyes have been driving her crazy with itching after getting her back to Maryland so we contacted her eye doctor who did her cataract surgery and they told us to use some Refresh gel at night in addition to her usual dry eye drops, and it seems to be making a difference so we don't appear to need an appointment at this time for this problem.

Monday we see her primary care geriatrician. We will try to ask him all the questions we forgot to ask at the first two appointments. He already got us a handicapped hanger so we can park closer when we have to take mom out to appointments. I want to ask him about having an occupational therapist come to the house and help us make things safer. I also want to ask about the home health care nurses who in PA were coming and checking on her twice a week and see if something like that is available in MD.

At this point, we are very concerned about how lethargic she feels. She does not want to get out of bed and it's a struggle just to get her to sit up. When she has to walk to the bathroom or living room with our help she complains of being exhausted after just a few steps, and out of breath. The exhausted thing is new since the fall, but the out of breath thing is new since the last couple of weeks. She does not have a fever or chills or any other indicators of any infection anywhere.

We are also wondering when we should change her compression sleeve that she's been wearing since the fall because it was too painful to remove and we weren't certain how we'd get a clean one back on the painful arm. Mom has lymphodema from a mastectomy in the arm that was broken. I'm sure that wearing the same one since July 2 has to have that arm itching and just generally feeling gross. Plus we ought to check the skin under it at some point.

Our biggest issue is getting her to eat or drink ANYTHING. She takes a tiny sip of any drink or two tiny bites of any food and then says she's too full and refuses to eat or drink anymore. It's a huge struggle just to get around 400 calories a day into her even with repeated offerings every 10 minutes. Luckily she still likes Ensure (2 sips at a time) so we switched to the Ensure Plus and she seems to prefer that to solid foods. I know the cheekbone break had her mouth sore (she was bruised inside and out) and the teeth on that side were sensitive. How she managed not to break any teeth is a mystery to everyone. She's dehydrated enough that when she urinates she only has a few drops at a time. We're honestly scared about what to do. Her living will states clearly no feeding tubes which means we have to get her to start eating soon.

MN Chickadee

I'm unclear how someone who is hardly eating or able to get out of bed to use the bathroom is going to participate in physical therapy. Some doctors will prescribe anything to duck out of being the bearer of bad news; they are human too and often just don't want to be the one to deal a blow to a patient or family if they don't have to. Some are really focused on their specialty and whatever scope that is and don't get dementia. Honestly I would get her on hospice. What you are describing is end stage and she would qualify. I'm sorry to say the fall and other events may have sent her down a path she can't come back from. Falls and broken bones are common with dementia and are often a catalyst to end of life care. Once a PWD starts this process no amount of therapies or treatments or strategies help. Their body is starting to prepare for the end; they simply won't eat or move around more. It doesn't mean she will pass this week or this month; many people last a while on Ensure. But Hospice would make sure her days are comfortable and provide services to her and to you and are available 24/7 when things come up. They help prevent bed sores, treat pain, and focus solely on mental and physical comfort. It would be an appropriate next step for someone who is eating and drinking that little. Hospice will come to your home or literally anywhere she is living.

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harshedbuzz

@JMack88

You and your sister have done a tremendous job providing car for your mom in the aftermath of the fall, but it doesn't sound as if it is sustainable long term. Kudos to you both.

Sometimes, when there's a fall it can be a chicken-or-egg situation. You are seeing changes in cognition and ability you would naturally attribute to the trauma of the fall. But I feel like sometimes it's further brain damage that is causing the changes and that those changes also led to the fall. You see "hearing loss" related to the fall, but it could be changes in auditory processing from the same disease process that put her at risk for the fall.

Sometimes when you are working with a team of medical specialists and a PWD the 10 Blind Men and Elephant Effect is enhanced. Each specialist offers their standard-of-care whether it is applicable to the patient, their family and situation. It doesn't sounds as if your mom is a great candidate for PT regardless of where it happens-- she'd have to get out of bed, get appropriately dressed, understand what she's asked to do and comply reliably. I would give it a try, she might enjoy the attention and comply. But if she doesn't, expect that she will be dismissed fairly quickly.

Given her health issues, I would look to a SNF for custodial care. Her summer home could be sold to fund it. If you can get her ambulatory, she might be better suited to a MCF.

HB

PS I just noticed the dry eye issue. This can be miserable. Is she diagnosed the dry eye syndrome related to autoimmune (me) or is more of an old-age (my mom) thing? Is she allergic to something in MD? Perhaps a once daily allergy drop like Pataday would be helpful. You could add drops for dryness at a different time-- the ones I use need 15 minutes between drops. There are some decent prescription drops for chronic dry eye-- I like Xiidra of the ones I've tried plus I use a heated eye mask for 10 minutes at least once daily. I'm considering a light therapy but haven't had the time to arrange it with mom's recent fall/skin cancer.

JMack88

Some things are improving slowly, but improvement nonetheless. For instance, we discovered she eats more if we allow her to feed herself. We had been spoon feeding her because after the fall, one arm was in a sling and her tremor was so bad in the other hand she couldn't hold anything and get it to her mouth. The tremor has calmed down, still worse than it originally was, but she's able to feed herself now and the food intake has improved. She's starting to show interest in getting dressed and getting up for the day although it takes until 1pm to actually get her fully together for the day. She's showing interest in going back to her 10 minute daily walks although the minute she actually stands up she's too tired to actually follow through on that.

I just don't know what to think.

JMack88

Well, fingers crossed, mom has been well enough to get up and get dressed every day this week and has been talking about starting her 10 minute daily walks again although she doesn't have the energy to actually do it. She's been eating more since she could finally stop shaking enough to feed herself, and the arm sling is off so now she's sleeping through the night instead of waking up every time she tries to roll over because she thought it was too tight. She's showing interest in showering but we aren't prepared for that yet waiting on the shower chair, so we're still doing sponge baths. She's gone to the hairdresser and seems to be getting back to her more upbeat self instead of the frightened and paranoid self she has been during the initial phases of healing.