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According to dad's primary doctor, Alzheimer's/Dementia but doctor will not send him to a neurologist or appropriate doctor to confirm diagnosis. Doctor went off input of sibling and a brief in office test. Then loaded him up on meds Haldol, donepezil, and tramadol. Doctor claimed to have removed him from tramadol but allows patients and their caregivers to keep meds taken off of. Also allowed to keep full dose of Haldol and break in half rather than remove or re-write the prescription.


When I did a visit a day before the covid/pneumonia diagnosis he had none of the symptoms being mostly talked about in the media. But I was so upset by that last visit. He was so hard to wake and could not stay awake not even a minute. But the meds in a way was keeping him drowsy so …why would I think covid/pneumonia. Totally blindsided by diagnosis.


Still not sure hospital landed in all the right places. He is still bad off although back at home. The hard to wake started the second week of this month and I had to really work and call for him to awake on last visit but don't won't to list specific day. You know why.


I spoke with him tonight and he is still out of mind not understanding as I try to communicate, speech impaired (like his tongue can barley respond so I know the meal being provided by sibling is not going to be eaten. I hear the not being able to stay awake. I don't know if he is going to last.


How can I think any of these including disease progression? I don't know what to think or where to start to help dad. I did call his doctor but no call back today.

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AlvaDeer

I didn't mean to upset you with mention of a restraining order. I don't mean to appear as a meddlesome mean sister. I don't believe family should go around suing each other and putting restraining orders on each other.

However, my brother does frighten me with his vocal threats, in face ways, and following you when you try to remove yourself from the in-face position. I'm upset with sister for calling this bully. My family can go visit and we all sit in the same room and she will still call the siblings saying we did this or that.

So at this point, I would welcome any action taken against me in the court of law because I am exhausted trying to change my approach when others won't let up.

I'm trying to get into my thick head that if a caregiver sees a lump develop on a person's head (the one they are caring for) and choose not to have it looked at they have a right just by being the caregiver and that relatives have no right to ask why not.
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How do you know your father is not on hospice? I don’t know for fact but sister said he is on hospice and this is the name of the company. Well that is the same company I had them under before. They don’t provide hospice for that area just regular home health. Asked to see papers and no avail.

I have asked about these documents and she will not produce. She always said she had but upon mom’s death and request at funeral home she never produced. Sister never left home and lives at home and is caregiver. Father is 86 as was mom.

I have started adhering to sister’s wishes. He can only see this doctor okay. I don’t want you to take part in mom’s funeral planning okay. Dad can’t go for a ride okay we will walk the yard or sit at picnic table and I attend to him and provide companionship (back before he started going down and it was warm outside). You can’t, you can’t okay.

I’ve been very open about my family here on various post and yes there is lots of un-clean water under the bridge on both sides as with most families. I don’t believe anyone is squeaky clean not even caregivers. We all mostly try to do the very best we can I’d assume and hope.

I wanted to give the update on dad’s condition, which is not improved but in fact further decline with the noticeable weight loss/worsening hoarseness. I also wanted to mention how the visit went.

I appreciate what you're saying based off your experience. I'll take some things into consideration on what I can do differently. I've tried the walk away but just knowing there were not gone did not allow me to rest. Now it's dad left.
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AlvaDeer Jan 2021
I do believe your sister is the primary caregiver, and it seems she was to your mother as well. And it seems medical is recognizing also her position as same. You will not be able to come to her house and call an ambulance. I am sorry for this struggle. It must be a dreadful thing for your Dad to be witness to in this his last time.
I must tell you that as a Nurse I was often witness to Siblings at Struggle over the beds of their fragile elders. I was the one who was the recipient of the tears of these Moms and Dads after Security ushered out the families. This has had a long lasting effect upon me, leaving me with almost no sympathy for these stories. I apologize for that.
As was said, you do have access to the remedies of the system. APS and attorneys. Do avail yourself of them. There is honestly nothing we can do about clearly a long, ongoing situation but offer you our sympathy. That I surely do, to yourself, your sister, and to your father especially.
Your latest visit to your Dad had to be so distressing to all concerned. I hope you will be able to visit him again, but I do think you might need to give prior notice and to reassure your sister you will not be calling an ambulance while you are visiting.
Again, avail yourself of the remedies of the system, and wishing you good luck.
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How do you know your father is not on hospice? There is no way you could know whether he is or not unless your Sister told you he is not.
Have you asked your sister if she has Health Care proxy, POAr guardianship?
Is your sister the in-home caregiver?
How old is your father?
This is sounding like sibling war over a father who is in the care of one sister, with the other sister coming unannounced, calling ambulances, and arranging transfer to hospital that the father has already refused. My own mother did the papers not to return to hospital care under any circumstances, yet in her last days and weeks of life she would not have remembered anything done a month before; she was too ill; she was dying.
Your Sister allowed your Dad to speak with you, told you he was not well, and it is my opinion that there likely IS understanding with medical, likely IS hospice care, and likely there HAS been a decision for no more hospitalization.
Your recent actions may mean, sadly that you are locked out of visiting Dad in his last days.
If you feel you should call APS (Adult Protective Services) then I think you should do so. If you think you should see a Lawyer and attempt to get guardianship of your father and take over as his caregiver and his health care proxy, then make that call early Monday Morning;that is your right.
None of us have anything but your own side of this story. Quite honestly it seems there is some water under the bridge we do not know about. To be frank, even without hearing your sister's side, I tend to be ON her side. Were I caring for my Dad at home, acting as his POA for health or his contact and proxy as his next of kind, if I were helping him come to end of life decisions, and negotiate his loss, then quite honestly I don't know what I would do about your actions of coming unannounced to his home and calling Emergency Services. About now I would be calling my own lawyer for a restraining order.
As I said, we have "your side" in this story. We do not have your Dad's nor your Sisters. There is no way we can make a solid recommendation of what you can do other than to use the system to intervene on your behalf. That means Adult protective services or the equivalent for you, or seeing an elder law attorney and applying for guardianship. Which, if you aren't the caregiver, you are unlikely to win, imho.
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I'm not POA. I'm not the guardian. No sibling, after trying to research, appears to have guardianship or POA. But from speaking with several lawyers, a healthcare proxy may still be getting used to have their way.

I made my concerns known again to the prescribing physician. 1’st call resulted in no call back but concerns left with front office. 2’nd call I got, “are you the caregiver, guardian, or POA.” I become matter-of-fact stating I'm a concerned and involved daughter and a daughter who was given permission to speak to physician in which they will not honor. 3’rd call asking was doctor/nurse going to return my call or did they prefer I bring dad in. Receptionist came back saying they are refusing to speak with you and says talk to your sister and no they did not want dad brought in. I told them that I did but sister only said, “dad no longer had to see any doctors.”

On to sister. Beginning of last week I spoke with her stating my concerns and avoided bringing up meds. She explained that dad did not have to be retested, no longer had to see doctors, and that extreme weakness/hoarseness is his new norm.

Rest of week, she would not allow me or dad’s sisters to speak to him. Always giving us the he is sleep or just missed him/sleep again whether morning, noon, or night.

Fast forward to yesterday. She finally decided to let me speak to dad. She stated that she was tired and dad was bad off. So with that opening I asked was he still taking the haldol and donepezil. She stated she no longer gives him those meds. I asked how long ago that stopped and did he have to be monitored? She got off phone and gave dad phone. I asked dad how he was doing. He in a voice cutting in and out (hoarseness/whispering) saying not good, not good, not good. I do not feel good at all. I told dad I had errands but decided to go visit afterwards. Upon arrival sister immediately asked what I was doing. I stated visiting. She goes well you need to announce when you are coming.

Dad head and hands were doing that shaking thing and it appeared he had just spit up, front of pants damp. He asked me for water. I took him the water and then asked sister if I could carry him in my car to emergency room for a checkup. She started repeating over and over that he was not going anywhere. He was under hospice (untrue and confirmed). By then the house phone went to ringing off hook and I knew she called for backup from other siblings.

Dad kept laying right back down so I asked him if he wanted to be checked on. He said yes and I called ambulance. I spoke with sister who then called for her backup to come out and then went to telling dad remember we said no more leaving home. Remember we said no more leaving home.
 
They checked him and then said his heart was fine but the other concerns could be anything. Sister and brother went to spilling this is his new norm and why he should not be taking to ER. They finally decided to let him go but sent me text before I got home under an hour saying they sent him right back home.

I’m beginning to think I need a restraining order on my brother if not both. He gets very up close and personal and threatening to all of my family. Yesterday I accidently bumped the door when paramedic asked me to turn off heater. I then immediately apologized saying I did not mean to bump him. He goes, I know you don’t want to hit me, believe me you don’t want to hit me. I guarantee you don’t want to touch me it would be a mistake.

Forgot to add dad is only skin and bones and face sinking in. In a matter of the few weeks I've been gone, I see even more weight loss. Paramedic mentioned when raising his shirt and pressing his stomach asking if in pain. When his pants fell when attempting to get him to gurney I was able to view rest of body and it is not good.
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He is on some quite heavy medication considering he is not diagnosed by a neuro-psyc. That would concern me.
ARE YOU POA? If you are not, then not much of the rest of what I am saying would matter. So if you are NOT, then make your opinion available to the person who is; I think your points are well taken. YOU cannot tell what is going on with dad and I doubt anyone else can either with all this medication. Moreover, if he has Covid this medication may suppress his breathing, his being able to move around.Not good.
Let us say you ARE his POA. First is to get these medications withdrawn safely one at a time. Speak to the doctor and say that unless Dad exhibits distressing acting out that could worsen his condition you want him not receiving any medication other than what he needs to control pain. Tell him that before psychotropics are administered you want an exam by a neuro-psyc and that you feel it is possibly "NOT GOOD PRACTICE" (as in mal-practice) to administer heavy psych medications without a neuro-psyc exam.
Again, you either are or are not his POA for health. If you are not, speak to the person who is. If you are, speak to doctors and personnel to insure Dad's best chance for recovery (movement, exercising his lungs to prevent pneumonia).
Wishing you good luck and hoping you will update us.
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MACinCT - I dislike Tramadol. That was my husband's first prescribed med for his neck and back stenosis issues. First tablet had him foaming at the mouth. Sister changed every single med regimen I and hospice had established for dad and mom. They were both well (on hospice for 3 years). I as well as hospice was discontinued early this year. Then mom started having issue after issue and went down fast. I even saw where risperidone, a med that caused mom hallucinations, added back to her meds.

Emotionally Numb - I guess the questions are numerous and I’m confused. I can’t figure out what's going on because dad started having falls which coincide with the Tramadol add-on. Then he was placed on haldol and donepezil (more later on that) and I was seeing the hard to stay awake/mostly sleeping, weak, slurred speech, and memory/concentration made worse where at first it was very good for 80 plus year old.

So on the last visit, the totally different was my husband and I could not wake dad up by just calling his name this time. So I had to shake and shake, and shake and call. By then my husband and I got scared. Then finally he was awake but going right back to sleep. His pressure was kind of iffy. Got him to start eating a piece of fruit and drinking some water but he was still doing that fall right back to sleep and I had to keep doing the shake thing to get him through. I wanted to carry him to ER or call ambulance but husband was like don’t start the fight. So instead I cried all the way home.

Next day sister sends him to ER and that’s when we got diagnosis of Covid only and she said he was discharged with 7-meds same night. Then couple days later he was sent to an out-of-town hospital and he was kept for a week saying he had covid/pneumonia and was being treated with antibiotics and supplement oxygen.

Dad is 86. We are two weeks later on the diagnosis. Dad had a bad UTI back in January I believe. Mom was the one whom ended up with sepsis, injuries to her head, pressure sores, and med overdose.

All – the haldol and donepezil came in I believe when they took away his care keys. He started to rebel trying to sneak the car or ask neighbors to take him places. Next thing sister started saying he could not use his riding lawn mower, he could not feed his own dog, he was not suppose to walk, he was to sit.

I don't know what to think. I was trying to wait until he got a second testing to see if he is clear as well as us before a visit, but now I hear from a close friend, who's dad also tested positive for covid but only lost taste and smell that he does not have to do a second test and can return to work after ten days instead of 14.

I'm trying to figure out all possible issues to help dad with whatever life he has remaining if possible. Although it will be a fight between myself and siblings.
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This doctor is a family/internal medicine specialist. The closest neurologist insist on a referral, which would only take me about two hours but about 1 hour travel for him. I’m trying not to require him to travel 2 hours to get to one (three hours for me but I’d be fine). So after doctor would not do the referral, I requested at least a MRI. Also denied!

My dad started having falls earlier this year. I knew something was off. Snuck a peak at his medicine one day and learned he had tramadol that he could take up to two times daily.

Fast forward to maybe a month later. Sister sent dad to ER citing violence and
confusion. Upon me picking him up after discharge, the ER doctor said he and
his staff noticed no violent tendencies during his almost 24-hour stay and that
his falls and confusion could be due to the Tramadol and that a fragile body
where it appears he’s not eating much also to consider removal of Metformin.
But all the test they did were clear and not showing infections and ct was even
pretty normal for his age.

So I gave sister the discharged papers to follow up with primary. Saw she had the appointments for the following week. So the same week, he ended up on the last two meds. Come Monday he was on Donepezil and by Thursday he has on Haldol - yes same week.

After seeing dad in a weaken state, slurred speech, and with the shakes since the last prescriptions, I finally took him in to same doctor demanding changes and got nowhere because dad does not live with me. I have talked with several members of his health care teams and they said spirited but never violent.

Sister makes up issues, to get the meds she wants in her arsenal. Saw it happen when they were under hospice and I was providing the care. Mom’s records before her death stated her stroke was possibly caused by a med overdose whether intentional or none-intentional amongst other issues.

I don’t know if I can demand that sister be tested for mental issues that I’m
seeing and some social workers with hospice cited seeing but did nothing to
help me when I asked them to speak up with me with adult protection.

I'm afraid I will be losing dad soon too if I can't get someone to intervene. And no, no help from siblings.

By the way, when he got the covid/pneumonia diagnosis he was sent back home from the first hospital with 7 additional meds according to same sister. Then she told me and another sister this week on three-way that they don't give meds for covid and was only getting antibiotics in the last hospital for his pneumonia.

So now I'm confused as to whether they give or don't give meds to treat covid, Where did that first 7 come from.
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gladimhere Dec 2020
He needs to see a geriatric doc especially since he is not able to get a referral to a neurologist. Geriatricians are specialists of all things elderly. Family practitioners do not have the same training.
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Is the doc a geriatric specialist? If not, a doc change is in order.
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Your dad's PCP is obviously uninformed about AD and ill trained to diagnose it. It's not malpractice but it is certainly unprofessional for him not to refer your dad. Some lazy physicians just label any dementia as AD. A PCP can administer cursory tests which can suggest dementia, but once AD is suspected he should refer the patient to a neurologist. Haldol is an antipsychotic. Why was that prescribed? Tramadol is for pain. Was your dad in pain? Donepezil is appropriate but only if your dad has AD which hasn't been determined clinically. The fact that his PCP didn't make a referral, go ahead on your own and make an appt with a neurologist that's part of your dad's insurance plan. Dementia has many causes and AD is only one of them albeit the most prevalent cause. Some dementias can even be treated or reversed. With the appropriate tests, AD can be diagnosed with almost 95% accuracy. I would be looking for another PCP.
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Haldol is not a good medication for people with dementia. If your dad has Medicare then you don't need a referral for a neurologist, you can just make the appointment. There is no definitive test for Alzheimers, the you basically ask a series of question and see if the patient can answer or solve them. Or they do head scans and look for several things that can indicate Alzheimers but it's not a definitive diagnosis.
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