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I had an account under another name awhile back and had expressed some fears that this might happen. A very insensitive and UNEDUCATED (the dumbest are always the most vocal, sadly) idiot on here tore into me for saying that in our area, hospice aggressively removes all medicines. She smugly talked about how any doctor who has noticed such behavior needs to be schooled and is hurting patients by warning people that it can happen.



NOW I'M IN THIS SITUATION EVEN HAVING BEEN WARNED THAT IT MIGHT HAPPEN!!! I can't believe with all of my forewarning and concerns, I'm now fighting the hospice nurses to NOT kill my dad. They are snowing him with morphine! Just because there is a standing order for morphine if he needs it (great idea- I'm all in for that, I don't want him in pain, ever) doesn't mean that they should come in the house and snow him to 88% O2 sats! If I hadn't stepped in he would have been dead today. My poor mom is being run over by these people. We really need to move him to palliative care but now that they have initiated treatment I'm feeling stuck. Trying not to make waves with these nurses but good GOD, why are they so hellbent on putting him to death? It's like they only believe that hospice is appropriate for people who need to be morphined to full dose 24/7! I'm so frustrated. He was doing fine on Tylenol/Motrin around the clock and it was managing his pain just fine. They ALSO tried to bully my mom into:
- removing Flomax
- removing all blood pressure pills
- removing Synthroid
- removing iron (he takes it once a week, oh the horror!!)
- removing multivitamin
- removing aspirin
- removing Tylenol and Motrin (!!!!! Isn't hospice about COMFORT??)



We've initiated hospice because we don't want AGGRESSIVE treatment but he easily has several months/years possibly left. There is no terminal condition. I totally regret having done this now. Has anyone else successfully moved to palliative care after starting hospice? I feel like these nurses are going to go completely ballistic on my mom and me JUST FOR suggesting that he stay on his prior meds. The one nurse argued with me that Synthroid is treatment and not appropriate for someone who is going to die in a few days (!!!!! this was weeks ago and he was alert and sitting up joking etc.) I had to delicately dance around the subject and say, "Oh, it's just for comfort. We all feel better when our thyroid is supported." Why am I having to dance around them and accommodate them? I thought the family and the treating physician should be the ones making these calls?!? I wish we had never started this. So frustrated and saddened. Vent over.

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First of all, I am sorry that you are so upset. Obviously, you are concerned. You love your father and want the best care for him.

You need to vent about your feelings. I understand this.

Can you please share why your dad went into hospice care to begin with?

Nurses, especially hospice nurses are capable of seeing when a patient is declining. There are signs that the patient’s family may miss.

Also, a person can ‘rally’ and appear to be improving when they aren’t. My brother did this, but indeed, he was dying.

What are your dad’s specific health issues? In your profile, I saw that he is 90. There must be serious issues if he qualified for hospice.

It’s common for people to stop taking certain medications when they start hospice. What exactly have the nurses told you about why they feel there isn’t a need for these meds?

Nurses can usually tell if a patient is in pain. That is why they give morphine. Hospice provides comfort care to address pain and prevent any pain from occurring.

What has your father told you about how he feels?

You are free to speak with other hospice providers and switch to another organization if you choose to.

Our family has been satisfied with hospice care. We were fortunate to receive excellent care for our family members. I’m sorry if this hasn’t been your experience.

I can’t imagine that hospice would intentionally want to hasten death.

Have you taken advantage of speaking with your hospice social worker or clergy? You may feel better after speaking with them.

Wishing you and your family peace during this difficult time in your lives.
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SpringLover Mar 2023
Thank you so much for your kind words. Yes, sometimes we really do need to vent. We actually have never been told that he would be a perfect fit for hospice, but because he no longer can walk on his own, and my mom struggles on her own to help him with baths, etc. we thought this would provide them some extra help with basic care things like that. It’s also nice for him to have a hospital bed where he can watch TV comfortably. Yes he does have quite a bit of pain, but it’s all arthritic. we have of course had to put him on Tylenol and Motrin for that pain and basically just laying still helps to alleviate that. But he does hurt when he has to move in order to be bathed, etc. In this particular instance, I think the nursing staff is not used to seeing someone assigned to hospice who is not about to die. I can’t think of , a group of people who have been more confident that he was going to die multiple times and of course he remains stable. At one point I just politely asked what is the condition that you believe he is going to die of? Their answer was that no one in hospice lives longer than a few months. I guess that’s been their personal experiences so that’s what they go by. But they can’t give me any reason why they believe that he should be dead by now.

So to your question, he kind of slipped in for hospice, because we asked for it, because he’s not ambulatory. But he wouldn’t be considered terminally ill other than the fact that he’s almost 91. And to be honest, I think it probably would be easy to qualify most people in their 90s for hospice particularly if they are no longer walking. the problem is that every time we point out that we are managing his pain adequately etc. it seems that we are met with a blank stare. There was one time that my dad even intervened and asked why are you guys talking about me dying? The nurses were trying to give my mom a lecture about how he was going to die within a few days. This was a few weeks ago. I think it’s just kind of a pattern they are in because so many of their patients are that way I guess. Like you said we may need to go to a different provider. I don’t think they are vicious. They just do not seem to look at the patient. They look at the textbook way of doing things and claim that all of the stages of death will happen within the time frames in that textbook. They were predicting that he was going to die before they even saw him.

In fairness, I don’t really think the doctor herself is trying to hasten death because she has the morphine as a standing order as needed. She made it clear that if he doesn’t need it, he doesn’t need to take it. The nurses just seem to be in a bit of a habit. I don’t think they are mean. They just really start to believe that everything they see means someone is going to die.
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Thank you for the advice and caring answers. It’s such a blessing to hear a kind voice… for now I will just tell them we are continuing his old meds just for stability… we get told, “Well, those medicines don’t help anything.” Or “It’s best to face the reality” etc. I think we just have to yes them to death and do what we want. I just feel bad for my poor mom having to be told these morbid things every time they come in the house. Tonight I just told her to let it kind of slide off of her like water. At least she is starting to get used to the pattern and it isn’t as upsetting anymore. 😂🤷🏻‍♀️
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Spring, I see your dad has Alzheimer's/dementia. Is that the reason he can no longer walk? Does he have other medical diagnoses? When entering hospice it is standard procedure to remove all life sustaining meds. Would his meds be considered such? Maybe the folks have an agreement that at a certain point hospice would be initiated? Maybe dad should be in a nursing home since he has become hard for you and mom to care for? Is there any burden of care considerations in starting hospice?

Your dad, because of his dementia, may very well not understand the full implications of his health situation. The arthritis must be terribly painful if it keeps dad in bed and may require morphine to relieve the pain? Maybe Tylenol no longer works for him?

I would not hesitate to have him evaluated by another hospice organization, try to make it a non-profit. It sounds like palliative may be appropriate, but that is.just a guess as I am not a medical pro nor hospice provider.
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SpringLover Mar 2023
So the "dementia" is memory loss. He has a hard time holding onto a memory for more than about 10 minutes. But strangely enough if you ask him about the event days later he can recall it. It's been at this level for about 7-8 years. Now, the arthritis pain has been bad in his back for over a decade. He's always said, "As long as I can sit down I am ok!" So that's kind of what he is doing now but also laying down. Blood pressure is 125/65 (I considered that too for pain levels just to make sure) and respiration is back to normal now that we stopped the morphine. The reason the Tylenol stopped working was that they REMOVED IT. Pain was controlled well with Tylenol and Motrin prior to hospice coming onboard.

I'm about to go over there again and help him with the new bed. They brought in something a bit "fancier" but it only has 3/4 railing so he's getting used to learning how to work the new buttons.

Re: nursing home, we have around the clock in home health aides. We are paying less that way than if he were in a nursing home. Funny story: when he was discharged from the hospital a few months ago for a UTI the nursing home COULD NOT CONTAIN him even though we were paying $800 a day for a semi-private room. We had to hire sitters on top of the daily rate to stay with him or stay with him ourselves! He was not ready to start sitting up and walking yet (he was in step down rehab) but he wanted to leave and they saw it as a legal falling risk (which I get- we are a sue happy society). It turns out that it's cheaper and far more pleasant to just have 24/7 help at their house. They are a lot happier that way.
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Your dad is in pain unless he is basically lying still and not moving. It sounds like the tylemon/motrin combination is not helping his pain. I think the two biggest issues are physically your mom cannot handle moving him to wash and clean him. And dad's pain levels.

It sounds more like he needs to be in skilled nursing rather than at home.

I cant imagine mom (at her age) or you being able to continue this for years.

And even at home hospice does not offer much relief and help from the care your dad now requires.

It may be better to stop hospice and place him in skilled care to take the physical burden off of mom.

To keep having to fight with these nurses not to overdosecdad in morphine just adds to moms and your stress.

There are no easy solutions for mom, dad and you. I am sorry for what you all are going through.

I also see you are giving dad a multivitamin but what kind of supplements are you trying for his arthritis/pain? Glucosomine condrotin and msm can help with that. I would give him that over a multivitamin if I had to choose between the two.
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You either need a new hospice provider or you need a serious sit down with the doctor to tell her what the nurses are doing.

There has been some disturbing press recently about hospice in some parts of the US recently. You may be signed with one of these bad actors.

Tell the doctor that you will need to find a new organization if they don't back off. And yes, they will have to switch out the bed, etc. It's not such a big deal if the patient isn't actively dying.
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Christine44 Mar 2023
Barb: You write: "There has been some disturbing press recently about hospice in some parts of the US recently." I'm nowhere near the East Coast, but where I live one of the major hospitals in the area (and part of a national "chain," or whatever they're calling themselves these days) has just closed the hospice department of the hospital. It wasn't huge but was probably much appreciated by people who did go there for solace and comfort, i.e. being treated by medical providers who are used to being around people who need this type of care.
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Medicare pays hospice costs. My mother is on hospice now. I feel fortunate to have the hospice provider for her. She updates me frequently. I am sorry you are not having a positive experience.

A person has to qualify for hospice. If they didn't Medicare would not be paying
They also are reevaluated if 6 months has passed. I think it would be helpful with getting advice here if you explained more about your mother's medical issues and why hospice was initiated. One cannot choose or not choose hospice if medical criteria is not met.
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Ok, something is just not right here. If your dad is under hospice care in the home then your mom or who ever is caring for him(family wise)has control over what he takes or doesn't take as far as any vitamins, minerals and medications go.
The hospice nurse IS NOT the one who gives the morphine, or anything else, your mom is, or you. So if you don't want him taking the morphine as often then just don't give it to him. And if you want him to take his other medications you just give them to him.
You are giving hospice WAY more control than they actually have. Why?
You say that you don't want to "make waves" with the nurse, but guess what, sometimes we have no choice but to make waves.
My late husband was under hospice care in our home for the last 22 months of his life and I was the one who gave him ALL of his medications, including any pain medications.
And if hospice thought he could stop one of his previous medications and I didn't agree, I told them so and they weren't stopped. I had to make waves with them ALL the time as I wanted my husband to get the best care possible.
You and your mom need to get a back bone here and stand up for what you think is best for your dad, and start making some waves. And if need be you can fire this hospice agency and hire another.
But remember, you and your mom have the final say about anything that hospice may suggest. PERIOD.
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NeedHelpWithMom Mar 2023
I was hoping that you would respond to this inquiry. You have loads of experience with hospice care.
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SpringLover, I'm so sorry for your experience! It's clear how much you love your dad, and how stressful this is for you and your mom. I'm a hospice volunteer and well versed in what the program does and doesn't do, so I hope this helps.

In general, hospice doesn't push death. But the requirement to be on hospice is a life expectancy of six months or less due a terminal illness (including dementia). A doctor diagnosed your dad with this, and your mom (or dad) accepted hospice. So while hospice doesn't push death, it does prepare the family for death.

Is your dad on Synthroid because of cancer or hypothyroidism? If it's for cancer, then yes, hospice patients are no longer seeking treatment for their disease.

Palliative care goes hand in hand with hospice care, but not all people on palliative care are hospice patients. Your mom (if medical decision maker) or dad can be removed from hospice, but then you lose the home health aides, etc.

88% O2 sat is not that low. I have a client's wife whose sats drop to the 50s, and she's still walking around and going to the grocery store.

It seems you need to talk to the doctor or nurse yourself and ask about your father's prognosis. If a doctor thought he had years to live, he wouldn't be on hospice. Nurses for hospice are specially trained to see things (like pain) that the patient might not want to tell his wife and daughter.

If the nurses are bullying you and your mom, you need to report that immediately. But I also hear a lot of fear and grief in your post, which is a completely normal reaction. There are hospice counselors for you, too, and a talk with the program coordinator sounds like a necessary step.

Please let us know how things go.
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QUICK UPDATE: This morning my dad finally cleared the last morphine dose out of his system (has about a 12 hour clearance time so I figured out when it would happen and went over there). He sat up, asked for water, breakfast (bacon/eggs) and played a game of Uno with me. My mom and I gave him the Tylenol and Motrin that he has had removed for the few weeks we've had hospice and he really perked up! That morphine scare was awful. Again, I'm 100% for letting him have it if he is truly going downhill. I know how awful pain can be and I would never let him suffer. I've been in that kind of pain before myself and would want that for myself. But he's never been in that kind of please-take-me-now pain. Yes, arthritis sucks. Thinking the glucosamine and other supplements might be a nice addition, good thought someone had on here. Will update later but I'm so thankful that my prayers were answered. We really thought we were losing him.

I told Mom when hospice comes today don't let them give him morphine unless they call me on my direct cell first. I left a note too. She is onboard with that and also thinks it was a horrible experience for all of us. FYI the Synthroid is for hypthyroidism. There's no cancer. The "dementia" is memory loss but it's been at this level for about 8 years now. The only difference is that now his body is a bit more feeble than it was when it first started. Thanks for all the suggestions!!
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CaregiverL Mar 2023
I think glucosamine or other supplements waste of time..they won’t make any difference
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Hospice care is end of life care. It recognizes that the patient is currently dying.

I hope you will do research on the meaning of hospice care, and will discuss with your Dad's MD whether or not your father is dying, who ordered hospice care, and why.

The person acting FOR your father, or your father himself, along with the MD has made the choice to have Hospice care.
If your Father or the person acting in his behalf do not wish END OF LIFE care now, they should speak directly to the MD to have Hospice cancelled at once. If they wish to continue end of life care it should continue.

I am so very sorry for your anger and your pain. You and your mom are facing a dreadfully hard loss. Please try to support and comfort your mom rather than adding to confusion in her mind at this time. Take your concerns to the MD who ordered Hospice care, to the Hospice clergy and social workers.

We cannot know all of the details involved for your dad now. We must trust in his MD, and in his or your Mom's decision for end of life care. We cannot know your Dad's wishes or his beliefs. My own advance directive requests that I be medicated with morphine below the level of dreaming even should it hasten my death. I believe that Hospice is/SHOULD BE now concerned with the wishes of your father, and of the person designated to speak for him when/if he cannot.

Again, I am so sad for you, and my heart goes out for you, and I hope you get grief support for yourself at this time.
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SpringLover Mar 2023
Thank you for the supportive and kind words. In some ways I think I should have listened to his primary when he warned that all treatment will probably be withdrawn, but he was willing to let us try hospice given his age and level of inability to walk around easily (and quite frankly doesn't want to- walking has been hard for him for about a decade and he would do it in short bursts. Long term back pain after his prostate cancer was cured with radiation a long time ago.)

It's been an eye opening experience... I am so thankful that they don't chintz on giving someone morphine in these situations. For someone who is actively dying and suffering that is a nightmare. Like you alluded above that is exactly what I would want too- if there is no chance for me to have any quality of life, I just want to be snowed out beyond any awareness, like you are when you're in anesthesia.

I am not the kind of person who enjoys "snitching" on people. I like to go to them directly and tell them what I wish they would do differently first. These nurses are GREAT at so many things- they are masters at bathing (quick and painless, they know all the tricks on how to keep things simple and thorough), they can change out Foleys, they can get good vitals. They just don't know that sometimes people elect hospice when they aren't terminal... the primary and the hospice doc both know that he is not terminal but very old and spends a lot of time resting. This is of course not a patient they would recommend doing chest compressions on if he flatlined and we wholeheartedly agree.

Lesson learned I guess: despite what people tell you, make sure you watch the situation and don't let anyone administer medicines without asking you first. That's my current plan... it turns out that the hospice doctor did not withdraw any of the meds (because she consulted with primary) but I guess the nurses feel these meds are not necessary (again, out of habit). I'll just ask them politely again to stop trying to remove the Synthroid etc. and if they make it into too big of a deal I'll go to the doc- but again, I hate being a little snitch if there is any way to resolve on my own. I like that people here have repeated that WE are the ones in charge of deciding when to give medicines regardless of what they would like to see happen.
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Is there another hospice agency in your area? Might be worth talking to them.
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The Nurse can tell by his bloodpressure if he is in pain. Dad with his Dementia may not know how much pain he is in. He may have a high threshold. But the perking up after the morphine left the body I would be concerned too. How much is this Nurse seeing Dad. More than 2x a week is not normal unless in the process of dying. People can live long on hospice but the criteria in 6 months and the reevaluated. And I agree, family is usually taught how to use morphine.

I would talk to Dads PCP, the Hospice doctor maybe someone different. From your discription, Dad does not seem to be on his last legs. If your not happy with this Hospice you can call in another. And the Nurse can ask all she wants for u to drop a med but that is the decision of the doctor overseeing Dad. Nurses cannot change orders.
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One strange thing that I have seen happen with hospice in my area is that a hospice organization that my friend was using to help care for her sister with Down’s syndrome and dementia was sold off.

The new organization is keeping the old name. This hospice was owned by the church and the new owners have absolutely no religious affiliation at all. It’s simply a business for them.

So, any new members of this hospice are being deceived. It’s sad that deception is happening in hospice organizations. It makes one wonder about the changes that are made and why the clients are not being informed of new ownership.

My friend learned about the change in ownership from her hospice social worker because she decided to leave after it was sold off and wanted her to know. My friend’s sister died shortly after the sale went through.
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SpringLover Mar 2023
The same thing happened with one of our hospitals- used to be religious based and then got taken over by one of the huge for-profit health systems. Those mergers can be a little sketchy sometimes. I'm so sorry about your friend's sister. I have a few friends with Down kids and I adore their souls.
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I’d say you don’t have clear 100% understanding of your Dad’s diagnosis based on your comments

Do you use old Dr or Hospice Dr?

You need a clear explanation of his diagnosis, prognosis and current status. Do YOU participate in evaluations/discussions (Hippaa release?) Less than 12 hours off morphine, immediately replaced with tylenol(andmotrin??) isn’t long enough to evaluate

He can play uno? Great. That’s not a medical evaluation. Neither is bacon and eggs

My Mom’s kidneys are failing and on good days she eats and reads. But, she IS dying.

if you don’t want him on hospice, quit. But is that your decision? It isn’t meant as free nurse visits, so you will be on your own. I’m curious also who IS in charge of giving medications, as the nurses DO NOT do that. Do you live there? Are you seeing whole picture?

if he needs palliative care, arrange that. But please don’t assume, and quit blaming hospice for doing what they are supposed to do. You need more information.
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Spring, after reading this thread, again, I am very concerned about your Mom. Are you supporting her, emotionally, each time you visit. Dad's meds are really not your responsibility and none of your business. You say that hospice is bullying mom, is that really the case? Are you ever there when hospice comes? Or are you making interpretations? Maybe you are the bully? Mom needs your support and you must trust her and dad's decisions.
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SpringLover Mar 2023
That's quite a jump in assumption. Bully much?

So in this case my mom has begged for me to be as involved as I can be. There are many reasons for this including the medical knowledge difference etc. Unfortunately because of my work schedule I can't be there to back her up every time she engages. I actually took off work today to stay with her and help her solve the problem. We all work very hard schedules so it hasn't been possible for me to meet with them in person although she has had them call me by phone multiple times a day.

Direct quote from my mom as I left today: "Thank you for coming. You always make everything better."

Who's the bully? Me or you? 😂😁😉
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NEW UPDATE: I feel so much better now. I actually was able to meet with the palliative care nurse today and we are all 100% on the same page. It seems they needed to be around my mom and dad for a little bit before knowing the entire situation. We explained why the meds need to be continued (for instance, he started having discomfort after they stopped the Flomax, saying he felt like he needed to pee all the time- which had been controlled prior) and she was 100% in agreement. We also explained that the overdoing of the morphine really knocked him out. She said sometimes people are oversensitive to the medicine so they agreed that he should only have it as needed, no reason to completely snow him.

I think once they met me in person and saw that my mom and I are not unreasonable or stupid they totally get it. He is doing great. I just got back from visiting with them after taking dinner over for them. Now that they are better set up and my mom's far more at ease with the current plan I know she will sleep well tonight. They were watching Johnny Carson reruns when I left them.

The nurse wasn't even offended when I told her that we had run his bloodwork and I explained that his thyroid is slightly undertreated right now (probably why his hands are cold despite good hgb levels) and she didn't even bat an eye at treating it. My mom sighed a huge breath of relief. She had been so terrified that he would die if they continued with the morphine like this and most likely he probably would have.

For those with parents with memory loss (I can't really say my dad is demented- he's never been given that diagnosis but he DOES have major short term memory issues- we think it's vascular after he had his gall bladder removed and he had anesthesia) I wanted to let people know that he's retaining memory WAY better after having done gamma wave listening for three days! Look into it. (Remember he is not Alzheimer's but this has helped his memory only- but it could be helpful with AD too.)
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sp19690 Mar 2023
Great update. You are an excelkent advocate for your dad.

Many people would gave just accepted hospices direction.

Glad the hospice is now on the same page as dad, mom and you.

This board is an invaluable teaching tool. It has been for me.
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Glad you cleared the air. They needed to understand where you're coming from, and you needed to understand them as well. Hospice does not require anyone to die, and people "graduate" from it all the time. Having that understanding is vital for all parties.

As far as the medications, the iron and multivitamin really aren't necessary regardless, but taking him off some of this stuff is because Medicare isn't going to pay for over the counter meds. If you want to keep giving him iron and vitamins, do it. Just let them know.

My mother was on Synthroid all the way until the end, including her eight months on hospice. They did take her off a couple of meds early on, including her blood thinner, and she was no worse for wear. We took her off her BP meds a couple of weeks before she died because they clearly weren't doing anything any longer. Her BP was all over the place for no reason, and when I asked the nurse if they still worked, she agreed that it appeared they didn't. Honestly, I think there's a lot of toxicity that builds up when these folks are on so many medications, and taking my mom off her meds really calmed everything down. Her edema went away entirely after we took her off her diuretic.

Someone who is not actively dying is not a new thing for these hospice nurses. Believe me, they've seen everything. I'm glad you were able to clear the air with
them. You are all part of your dad's care team, and if you and they become alienated, then it's not good for anyone. I fired Vitas, my dad's first hospice provider, after about two weeks because they didn't return phone calls promptly, scolded me for canceling an appointment so my dad could see one of his granddaughters for the last time, and their social worker told me, "This isn't about you." (That was the final straw.) I hired a small, family-owned company who did a wonderful job for my dad's final two weeks, and we had no issues. Sometimes it just isn't a good fit.

Communication is always the key in any medical situation, so keep those lines open and clear and it'll be smoother sailing for everyone. I'm sure you're also aware that if your mom is overwhelmed by this that you need to take the lead. It's much harder for older people to process information and make decisions, and ones that seem to be life and death are even more overwhelming.
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So glad you had a talk with the Nurse.

Alva will correct me if I am wrong. Medications do not leave the body as fast in the elderly. Thats why some are overdosed. Thats why labs need to be done. Gallbladder surgery is so easy now 4 or 5 1 in incisions and it is taken out. The patient is not under as long. But the anesthesia will still take longer to leave the body in the elderly. The longer under the longer it takes to leave the body. The more memory u lose too is what my Dad was told at 67.
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SpringLover Mar 2023
Very interesting and that makes sense. Hard to know how long he was under when he had it done but he was in his 80s so obviously he could have been at risk. It really did seem like he lost most of his short term memory right around that time and it never progressed i.e. he never stopped recognizing people, places etc.
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