sleeping 15 hour or more a night, falling asleep during the day.
Dear Alz-connected friends:
I'm back because my DH is now sleeping well more that 12 hours at night and falling asleep in front of the TV. I thought he was in mid-stage VD, but this behavior is increasing now. He is MY Caretaker, so I am now caring for him. He fell backwards in the kitchen this afternoon after getting out of bed at 1 pm after going to bed at 9:30 last night. So I brought him a blanket, a protein drink, and some Aleve.
I also put in orders to pick up for dinner today and for Brunch tomorrow. We live in Independent Living, thank goodness. I'll go down and pick up the meals.
I'm having increasing problems with my own health and right now I think I MAY have C-Diff from taking Doxycycline. I made an appointment with my Primary Care, but I don't know how I can get there without him. My basic problem is autoimmune progressive polyneuropathy, and I am confined to a wheel chair and everything I do is a major effort.
He often doesn't know what day it is. Friends we lived next to for 9 years (he was also our realtor when he sold our house) visited us in June and he did NOT remember them at all. He STILL drives and got lost coming home yesterday, even after putting HOME in the GPS. He told me how tired he was when I finally called him because he was so late.
I think he may be entering a new stage, but there's nothing I can do, I know. He is still continent and pleasant to have around, for which I am grateful.
When he naps and sleeps late I am relieved, actually. Which makes me feel guilty.
He has a Duke Neurologist, the Duke Memory Center. He presents VERY well, and when he first met him last December she actually gave instructions for DRIVING DURING THE DAY! Even tho' his CT Scan showed Global brain shrinkage and signs of many small burst blood vessels in his brain.
I am feeling very helpless.
Just seeking solace, information and advice.
Elaine
Comments
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Elaine I am glad to hear from you but the news is distressing, for sure. What do your sons have to say about all this? I worry about your wellbeing—and his, too. It sounds like you both need more help than you have.
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Elaine, I'm sorry to have to say this, but you have to speak up. The doctor evidently doesn't know the full extent of the situation. You know your DH should not be driving.
My cousin lived in Independent Living for several years. Several of the residents had personal attendants that they paid to attend them for a few hours. Can you hire someone to help you? Her place also had a shuttle bus to take residents to the nearby shopping center. Does your place offer transportation? Can you apply for county senior transportation? The manager should have references for senior transportation.
Why is he falling? Falls are a big problem. You can read online about fall prevention. But also consider checking all meds and supplements for side effects and interactions, because medications can be a cause of falls. Does he have a blood pressure problem? Is he a diabetic?
If you have C-diff, or think you have it, I don't think you should be going to the dining room or be near food area. Several of your fellow residents are probably also immune compromised. Read about the isolation techniques for C-diff. Does your doctor have a portal to contact for questions? Or is there an urgent care nurse for telephone consultation? You need some professional advice. You have to be very carefull to avoid further complications.
Iris
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I can’t believe still driving.
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Dear Iris, M1, and charley0419 thank you for your wonderful support, and great comments. We have long term care insurance, and I would qualify. There is a Home Health Care agency on site in our building! I would qualify due to my extreme disability. DH would not because he has to be unable to be left alone to qualify for dementia LTC. So he's not there yet.
It will be so difficult to do all the paperwork, but I will start on Tuesday.
We are picking up all our meals now, so I'm not eating in the dining room. I was having difficult side effects from Doxycycline, which can last for two weeks AFTER stopping it a week ago. It has taken me until now to begin thinking that I have c-diff which can be triggered by Doxycycline. Stay tuned! I have a doctor's appointment on Tuesday to begin investigation of the situation. And John will drive and take me in our transport wheelchair.
Our community does offer transportation, but many of my doctors are 15-20 miles away, and I often have 2 appointments a week. It would be very difficult and expensive to get what I need and my power chair is not portable (weight about 200 lbs). I wouldn't even be able to get into the doctors' offices once driven to them.
I am very severely ill, Iris. I even have neuropathy of my gastrointestinal sysytem, and have a serious swallowing disorder, for example.Food just stops going down and backs up into my throat. I have a procedure in December to explore the problem and try some measures to help. I won't list everything, but trust me, I'm a mess. Wheel chair bound. My nurse come to our apartment EVERY FOUR weeks to give me a 4 hour infusion of IVIG, billed at $50,000. Medicare and our supplement leave us with $0 expense. I've had this infusion every four weeks since 2013 and will have it for the rest of my life.
Yes, my DH shouldn't be driving, even tho' the memory specialist at Duke OK's it! I cannot tell him or take his keys, and my son in the US won't be the one to try to do it. My older son has lived in Paris since 1985, so he's not here, of course. I will send a message to his memory doctor, outlining what I see, and perhaps she will do the standard one page memory test to assess him when she sees him in December. I know his driving is dangerous, but I've been with him often and he makes good decisions and I don't even understand that!
He has fallen before yesterday (and he fell AGAIN last night). I don't know why, but it seems to happen after he's been sleeping, I think. I cannot even see what is going on because I'm stuck in one place most of the time. He hasn't had any new meds. He's not diabetic, blood pressure OK, tho' he thinks he as a Ventricular Arrhythmia and has been to a nearby ER 3 times in the last two weeks! Each time they do a 12 lead ECG and tell him he's having harmless palpitations…at least he's stopped drinking. But he doesn't believe he has harmless palpitations, he thinks he is dangerously ill. DH sees his cardiologist on September 13, and of course he will drive there. He is a PhD medical research immunologist who taught at BU Medical School for 25 years. It is VERY hard to tell him anything, Iris. I have never been able to change that in the 62 years we've been married.
I think we should move together to Assisted Living, which is part of our campus here. But he doesn't want that, either. sigh.
We have OK savings, but not enough to cover us living in two different places, Iris. I retired in 2000 after a year of 6 trips to the the operating room in 10 months, including 3 angioplasties and two stents, at age 57. So I must trigger LTC and hope we can pay for some of the help we need that way. I know it would mean a big 'invasion' of our privacy. And my DH is a very private person. I'm not.
I will send messages to his memory care MD, his primary care MD, and his cardiologist, today. Tuesday I will begin home health care for me…I have to pay for care for 30 days before the care is covered. I need help dressing and bathing and my neurologist will do her part, and the home health care agency, on site, will do their part. There is a TON of paper work. I need to feel better to do all this, for sure.
This forum is a blessing.
Love, Elaine
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I am glad you are thinking about assisted living. Sounds to me like you should be the one to make the decision. Maybe better to ask forgiveness than permission.
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Thank you for sharing more of your story, Elaine. I feel like we are kindred spirits because I too have multiple illnesses, including systemic lupus, heart failure, hypertension, spondylitis, and cognitive impairment, although I am ambulatory. But I live alone and I do not have any support, I have to do everything myself. Even though I do speak up, my doctors seem to have limited understanding of what I am dealing with. This is why I rely so much on the wonderful members of these message boards for suggestions.
I had considered moving to Independent Living, like my cousin, until COVID came along and made those places like death traps because COVID patients were being returned to live amongst the frail residents. So I decided to take my chances on my own home, where I could control who came into my home and who got close to me. I'm still here, but I am making plans for if and when I cannot walk up stairs, because I am on the second floor.
Back to you and your DH. Falling after sleep could be due to sleep inertia (not fully waking up), orthostatic hypotension, low lighting, and especially cardiac arrhythmia. If he thinks he might have a ventricular arrhythmia, that is very dangerous. He needs 24 hour monitoring, formerly called Holter monitoring. I just spent thirty days being monitored for suspected atrial arrhythmia, fortunately I was deemed to be okay. This is now called event monitoring, and was done over the internet. Episodic visits to the ER probably won't catch it. You might want to bring this up to the cardiologist.
Where I live, city buses and vans for the disabled are capable of transporting wheelchair patients because they have ramps and paraphernalia to attach to the vehicle. If your medical plan is paying for your expensive treatments, are they not also supposed to provide transportation to medical appointments? I'm just wondering.
Where my cousin lived in Independent Living seemed to be like Assisted Living to me, because they provided so much. The only thing they did not supply was medication monitoring. What benefits would you have if you moved to Assisted Living versus having a paid caregiver in Independent Living? Eventually my cousin received in-home care 24/7 with paid caregivers for a year or two because she had developed dementia.
Another thing I have learned is to ask around about my situation. Your doctors might have a social worker or nurse who can help you strategize. Also, don't forget the Care Consultants at the Helpline, they can have good suggestions.
Best wishes to you Elaine. Please keep us updated on how you are making out.
Iris
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You mentioned the Holter cardiac monitor and the 30-day event monitor. My DH wore the 48-hour Holter monitor immediately after having a stroke June 15, 2023. Then after seeing the neurologist in early July, he wore a 2-week Zio Patch cardiac event monitor. Both monitors showed no arrhythmia or cardiac events at all. On October 1 he collapsed on the bathroom floor and was taken by ambulance to the ER where his heart was found to be in Atrial Fibrillation (A-Fib). It took over two days to restore his heart to normal sinus rhythm. Although these monitors can detect cardiac events not normally caught by doctors in the office, they are not a guarantee that there is no arrhythmia.
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“I think we should move together to Assisted Living, which is part of our campus here. But he doesn't want that, either. sigh.”
Sometimes you just have to make the decision for both of you. He has dementia. You cannot rely on what he wants.
You know the current living situation cannot continue much longer. It is better to figure out the next step now. Now you will have more options, than you will when a crisis occurs. You are not going to be able to rely on him for much longer. You need to figure a way to move forward.Your campus is both independent and assisted living. Many with this configuration have a social worker on staff. If there is, could you enlist the worker to initiate the move? DH can think the idea came from the worker, not you.
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This is disturbing! The Zio monitor is supposed to detect 99% of arrhythmia within a 2 week period. Perhaps he didn't have arrhythmia during that period. My monitoring was done by Phillips, for 30 days. How is your DH doing now? Did he have an ablation? Is he on meds?
I have a similar story. I have been complaining of shortness of breath for over two years, was being diagnosed as having asthma, and only just recently was diastolic dysfunction/ heart failure mentioned. Actually it wasn't mentioned at first. The cardiologist gave me a new medication to try, and I Googled it while I was still in the exam room, and discovered it was for heart failure. Then I had to get the nurse to bring him back so he could tell me what was going on with my heart. I don't like feeling like my doctors are not focused on my issues.
Iris
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Your husband can no longer take care of your OR himself. You are going to have to accept this. Wanting him to be able to take care of you, to drive you doesn’t mean that’s what will happen. He should not be driving if he gets lost coming home from a normal errand. In addition, his need for excessive sleep means he could fall asleep while driving … with you in the car.
Since he is no longer capable of taking care of you, and you cannot take care of yourself, the only option is home health aids or AL. The fact that it’s not what he wants can’t be allowed to stop the move to AL. I really think that he would qualify for home health aids due to his being a fall risk.
You need to make the arrangements for your transport to the doctor’s visits. Whether that’s by a home health person, staff where you live, an area transport service for the disabled, or a medical transport, it’s what you are going to have to do from now on. You simply have to quit depending on your husband because he is no longer able to transport you. Wanting him to continue to do so because it’s easier than the alternative isn’t what needs to happen.
I think you might want to call in hospice for your spouse.
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@Iris L. wrote:
This is disturbing! The Zio monitor is supposed to detect 99% of arrhythmia within a 2 week period. Perhaps he didn't have arrhythmia during that period. My monitoring was done by Phillips, for 30 days. How is your DH doing now? Did he have an ablation? Is he on meds?
It is possible that he did not have arrhythmia while wearing either monitor. However, he had been abruptly falling asleep in his chair on an almost daily basis in the weeks leading up to and after the stroke. He was also having frequent episodes of falling backwards in the months prior. DH also tended toward Bradycardia, with pulse readings in the low to mid-40s. At the cardiologist appointment after the stroke, the doctor was rather dismissive, generally suggesting that that is what we should expect at DH's age (then 91yo). Eliquis was added to his regimen of BP medications. Ablation was not mentioned. A pacemaker was ruled out because his pulse was not quite low enough. He was given a "Heart failure" diagnosis.
He began outpatient physical and speech/memory therapy, and was doing very well with PT. He had progressed to where he could walk without even a cane for short distances. His stroke had been in the area of speech/swallowing and memory and had been considered "tiny" (in the words of the neurologist).
The A-fib episode on Oct. 1 was the beginning of the end for DH. After his heart was stabilized, he was sent home with an indwelling catheter after 5 days in the hospital. Six days later his catheter became completely clogged in the middle of the night, and home health care told me to get him to the ER via ambulance. After a stint in the hospital, he was released to rehab with a suspected UTI. The rehab hospital refused to listen to me and order a culture, so the UTI was untreated and got worse. I had no way to get him to an outside appointment. He was released from rehab to his first personal care home on Oct. 24, very weak and barely able to use a walker.
On Oct. 29, he fell backwards, hitting the toilet. He fell again that evening and was found on the floor by an aide. An ambulance was not called until the next day when he appeared to be in pain. He spent 11 days in the Trauma ICU at a large hospital in the city. He had broken 7 ribs, had internal bleeding, pneumonia in one lung, electrolyte imbalance, and a severe, drug-resistant UTI. He required IV antibiotics and electrolytes and a pigtail chest drainage tube. Discharged to a different rehab where he stayed until the day before Thanksgiving and then was discharged to the ALF (with enhanced care) where he now resides. This ALF was the ONLY place in the metro area that would take him. (No SNF would return my phone calls, despite being private pay, except one that wanted $15,000/mo. We do not qualify for Medicaid.)
While in rehab, hospice was recommended, and he entered hospice care upon moving to the ALF. He was taken off nearly all of his medications and supplements, remaining on Doxazosin (has BPH and a latent prostate cancer tumor) and aspirin (as blood thinner). He is now in Stage 7 ALZ. He is grotesquely swollen with edema and ascites from the diaphragm down. Lasix was added about 3 mos. ago as comfort care due to the swelling, but it is rapidly losing effectiveness. No shortness of breath. He is not on O2 yet, with pulse/ox readings in the 90s once his hands are warmed up. His hands are turning blue, and he is losing sensation in his fingers. He is starting to have contracture of his hands and arms, and his legs are locked straight. He is confined to a Broda chair with his feet elevated at all times, using a Hoyer lift for transfers. He is on pureed food and thickened liquids due to dysphagia. He can't be weighed, but has lost nearly all the flesh on his body. He will turn 93 on Sep. 13, God willing.
I realize this is way too much information, but I wanted to provide context. And in a strange way, it is cathartic to share the ugly reality of DH's (and my) journey through ALZ with co-morbidities.
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Fmb, it is not too much information. Family members need to know this. I am so sorry that your husband received such treatment. This is not the standard of care that I was taught. My neighbor had a pacemaker at age 90 or 91, I drove him to the ER myself. Your DH should be receiving passive range of motion exercises to avoid contracture. I wish I had more to offer you.
Iris
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Thank you for your concern. This was not the standard of care prior to Covid, but that is another rant for another forum.
He cannot remain in hospice care while receiving PT or OT. At this very late stage, hospice is essential.
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Fmb, I was not thinking of formal PT or OT. Maintaining flexibility of limbs should be part of care for the bedridden patient. This is what I found from www.alzheimerscaregivers.org.
Q: Physical health is still important — how can caregivers ensure their loved one gets enough exercise even while bedridden?
A: “For patients who have Alzheimer’s Disease or other forms of dementia, physical health remains important. Caregivers can ensure their loved ones get enough exercise even while bedridden by incorporating simple range-of-motion exercises into their schedule. These exercises involve gently moving the individual’s limbs through a full range of motion, preventing stiffness and maintaining joint flexibility. Caregivers can perform passive range-of-motion exercises by assisting with limb movements and incorporating stretching exercises to maintain muscle flexibility.”
The caregivers at the facility should have passive ROM as part of the care plan, just as the bedridden patient should be rotated every 2 hours to avoid pressure ulcers. This is how I was taught.
Iris
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He is in an assisted living facility, in their special needs wing. To put it very bluntly, this is where dying residents are warehoused. There are extra charges for increasing levels of service. This type of treatment falls under OT for billing purposes, so is not allowed by Medicare for hospice patients. Even if the facility staff was allowed to perform this service, facilities are staffed at the state minimum and aides simply do not have time (or to be honest, the inclination) to do this type of care. I do what I can to help him by passively moving his arms and straightening and rubbing his fingers, but I can go there only four days a week.
Yes, bedridden patients should be rotated every two hours to avoid pressure sores. It does not happen. DH developed pressure sores from sitting all day in one position in his Broda. An order was issued by the hospice doctor that he be put in bed after lunch every day, but it took weeks of my advocacy to get it actually carried out daily. Our very experienced hospice nurse tells me that this is the ugly new reality in the post-Covid world of healthcare.
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ElaineD, your situation sounds very difficult. So glad to hear you have LTC insurance and some savings. I urge you to use your savings or other options for transportation before an accident robs you of everything. The dangers are real, and can be life changing/destroying.
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It sounds as if hospice care isn’t much help. Moving him to prevent bed sores sounds like a very basic aspect of comfort care which he isn’t receiving because it isn’t allowed by Medicare for hospice patients. So that means that you couldn’t hire someone else to move him because he would be kicked out of hospice?
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I'm sorry if I didn't make myself clear. PT and OT are not covered by Medicare for hospice patients. Moving position for bedsores IS part of basic care that IS be provided by the facility under implementation of an order by the hospice physician. Unfortunately the standard of care and what happens in the real world are often two different things. Hospice does not provide around the clock in-person care. Hiring private aides to supplement the facility aides in DH's care is simply unaffordable.
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I'm sorry to read all of this.
Iris
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I sorry to hear what you are going through Elaine. Life ,and as you well know health, is priceless. Please don't allow him to drive again. No one should be put at risk.
Don't hoard your assets or insurance coverage for a rainy day. You are in a storm and those are your assets for exactly what is happening right now. Your sons have done well, they don't need an inheritance.
If the paperwork is overwhelming - consider hiring a professional case manager to assist you with how to file , what to include . They probably know exactly what is needed for each LTC company and how to word things. Why drag out approval , get the coverage going and move on to whatever adjustments you need to make.
Sending you good thoughts .
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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