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Hospice advise in Nursing Home. My dad was diagnosed with vascular dementia 3 months ago. After an ER visit for confusion Dr said he was moderate (2 out of a 10). Well, 3 mths later, he had a septic infection that caused his dementia to worsen. He's been in the hospital for 1 month ( took out artificial knee causing infection and replaced with a spacer filled with antibiotics). Long story long, he is in a Long Term Acute Care facility. He is always sleeping and hardly eats. He has problems swallowing so he's on necar thickened liquids. The Dr. has asked us about Hospice. I am trying to process this as the dementia has progressed so quickly after the infection.

My mom was moved into a nursing home 2 weeks ago so I think he should be close to her instead of a hospital.

I would appreciate any advise on this topic. Thank you!

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I remember how traumatic it was when the doctor said anytime we were ready for Hospice she'd sign off on it. Hugs to you. That is hard to hear, even when you are expecting it, and even more devastating when the decline happens very rapidly.

My husband was on hospice, at home, for 5 weeks before his death. It was extremely helpful for both of us. I wish we'd signed up for it a little earlier, but the time we had it was very worthwhile.

My mother was on hospice care for about 3 months, in a nursing home. The extra care and attention she got because more resources were available (NH staff + Hospice staff and volunteers) were very helpful. In fact she improved so much that they discharged her from hospice. That was a year ago. She is doing well, considering her chronic conditions.

Obviously I don't know your entire situation but from what you've said, it sounds like it would make sense to move Dad into the same care center where Mom is, and to apply for hospice care. Recovery from the septic infection and the trauma of the hospital stay takes a long time in the elderly with dementia. Who knows? He may gradually improve some while on hospice care. To go on hospice means the doctor has predicted that he is in his last 6 months of life. But nobody can make an exact prediction. Maybe he has more life ahead of him, as my mother did/does. Maybe the rapid decline will accelerate and he will die soon. In either case, I see only good coming out of hospice care for him. And it can be comforting to you and to your mother.

My mother has been living with dementia for probably about 5 years. My husband lived with it for 10 years. Runner123, that this has all hit you in the past 3 months must be almost leaving you numb. My heart truly goes out to you. Keep in touch here, and let us know how things progress. Take care of yourself!
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I agree with Jeanne. See if you can get your dad on hospice in the facility where your mom is. This way they can be together and you can also visit them at the same time.
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A point about hospice, sometimes patients improve while under hospice care and are taken off the hospice system and returned as they decline later on. It is not necessarily a death sentence. Good luck to you on this journey.
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My experience: The doctor's mention of hospice is most likely a suggestion as opposed to a question. Yet, as has been stated, hospice care doesn't mean Dad will die "tomorrow"; people do go in and out of hospice care. What it does is make the process of dying easier for Dad and for you. Ideally, if he can receive his care at Mom's facility, it will make it easier for you. And you do need to think about you during this time.
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Dementia goes in stages and on a plateau, then drops. Severe Alzheimer's disease (late-stage)

In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases, but communicating pain becomes difficult. As memory and cognitive skills continue to worsen, personality changes may take place and individuals need extensive help with daily activities.

Require full-time assistance with daily personal care
Lose awareness of their surroundings
Experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow (mom stayed on this for 14 days before she died)
Have increasing difficulty communicating ((Mom perked up a month before death, but I was carrying her around within 15 days of that)
source I have used: http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
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My mom has had dementia ever so slowly creeping on since about 2000, or after my dad died. Whenever she has a traumatic injury (broken knee, shoulder) it gets worse, but after some time, does settle down, but still makes the dementia worse.Hospitals who treat people for illness and broken limbs usually can't deal with dementia patients very well, and patients seem to be more restless and delusional there, I think.
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Runner123
I opened this email hours after getting a call from my husband's hospice care manager that he had fallen during dinner and had hit his head on the dishwasher door. Slight bump but no lapse into unconsciousness. This was after a noontime call that his left hand is swollen and tender. Do I want an x-ray and if it's broken, do I want the had casted.
He has been in the final stage of Alzheimer's disease since December. He doesn't speak intelligibly, he doesn't recognize me or anyone else, he does feed himself and he walks. He walks all the time which is why he now is gettng weaker and falling. The workers complain if he is medicated and lethargic. They complain if he is agitated and constantly walking, needing someone near him to prevent him from falling.
This is indeed such a sad time and no one knows how long it will continue. He has been out of my home for 4 years now. I would leave your Dad in the Long Term Acute Care facility for several months and only move him if he becomes stable. He will get the most care there. I would bring in hospice as they are such caring people and so helpful and take each day one at a time.
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Runner123, my heart goes out to you. My dad was diagnosed with Alzheimer's about 3 years ago, and it's suspected by not officially diagnosed that he has vascular dementia as well. He's is now in hospice, and that seems fast to me. I'm sure your head is spinning. As for hospice, I'd suggest getting them involved ASAP. For us, it's meant no more hospital visits and no more routine MD visits, and that's made life so much easier, especially since my dad had enormous cognitive drops following every hospital stay. He's been on the service for 7 months now and is clearly declining, but as others have said, it doesn't mean death is imminent. My mom (who had cancer) was in hospice for only 3 weeks, and I wish it had been longer because it was so much better for her. As for where, yes, keep him with your mom if at all possible - for their comfort and yours. And take good care of yourself in this time, even though I know that must be difficult. Big hugs to you.
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My mom has been diagnosed with Alzheimers 4 yrs ago and has been difficult since. She was in/out with it but she also has other medical conditions that seem to 'add' to her discomfort...at about the same time 4 yrs ago my dad suddenly became deathly ill with pneumonia which quickly turned into a 4 month stay in ICU having then had a heart attack and congestive heart failure. The suddeness of this all was quite shocking to me but fortunately having to deal with all of this by myself was numbing, to say the least. Somehow I managed to get thru it all; I've heard it said that God doesn't give you anything you can't handle but wow !!! THAT was almost devastating to me to handle all at the same time...Dad almost died but fortunately he is still alive but now he is wearing down again and I'm not sure he's going to ever bounce back...he had a defibrillator put in, his heart is strong but it is apparent that he is just not going to regain any strength back. He tires very easily. But he has been showing signs of dementia and I think he is noticing it too and is very resistant to it; he's afraid he's going to end up like Mom. Mom was also just diagnosed with an abdominal aneurysm so in addition to her Alzheimers I have no idea how it will affect that...how long does one stay at any certain stage of Alzheimers??? She was probably showing signs of it about 1 yr before diagnosed...she seemed to be a kind of plateau for 2 months but now she seems to be progressing again...this dementia/Alzheimers is terrible. Why don't someone get more help for this or earlier diagnosis for it ??? It's terrible to see someone be robbed of their mind, and their actions. I'm keeping them in their home for as long as possible, and keeping their safety in mind. As long as they remember their surroundings and be safe, that's what my goal is. They've always loved their home and yard. Dementia is the worst evil.
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My heart goes out to each of you who will be making the decision about hospice. My mom had care in a nh with hospice. It was a heart wrenched moments.
My experience with hospice was vey helpful. Unfortunately I had to fire the first hospices company and by the time I did my mom had 3 days with the second one. Be there for them till the end. Invite close friends to visit and family. Say what you have to say before they are at the active dying stage. Remember the good times and reminisce and take pictures. Above all take care of yourselves by exercising and eating healthy during this challenging time. I did go an Excersise every chance I got. It helped me to clear my mind and helped with stress.
Hugs to all!
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Thanks. I am off to the gym this morning. I will take a Zumba class and then a quieting Tai Chi class to calm my mind. The stress so difficult to manage.
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I agree with Jeanne and have one word of advise to add. If you have more than one option for hospice in your town be choosy as to whom you select. While they are all governed by Medicare they do have different philosophy's. I was in the same situation with an infection and signed my mother into the hospice organization that was part of the same medical group as my mothers doctors. They took her off nearly all meds and were pushing morphine to keep her comfortable. Fortunately I had caregivers who felt the same way I did that the morphine should be a last resort if she were in pain. She improved in the next few days so I requested some of her meds be re-instated. I was informed she could only receive them if in palliative care not hospice care and when I asked to be switched over to palliative care was told she was not illegible and that the hospice doctor thought she was where she needed to be. I felt trapped and called her case manager with insurance to see what I could do. I learned you can switch hospice organizations at any time and did so that very day. I had no idea there could be differences. The first organization seemed to have the attitude to help her die as quickly as possible while the 2nd seemed to have the attitude we're going to keep her as healthy as possible and give her as much quality of life for whatever time on this earth she has left. Very eye opening experience. Bless your heart this is not an easy time.
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Except the hospice. Everything is paid for on hospice. Where my daughter works, its a separate agency that comes in. So udo get those nurses and the NH nurses. Hospice rules have changed. You don't have to be dying in six months.
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Puthatknifeaway, hope u went with the xrays. He should have a scan of his head to see if any bleeding or concussion.
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I found this brochure very helpful about End Stage Advanced Dementia. It provides a lot of information about final decisions. It's written by a doctor and very helpful, IMO.
avoidablecare/wp-content/uploads/2012/04/Sharpe-Handbook-A-Caregivers-Guide-to-Advance-Dementia.pdf
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My story could be the same as Mominmyhome. Mom has been struggling with this for about 12/13 years. Every times she would fall or have to go to the hospital she didn't understand where she was or why they were poking at her (she has always hated drs. and taking medicine). If I wasn't there nurses would be calling to see when I WAS coming because they just couldn't be with her all the time. And as with helpmom, my mom has had hospice for 2 years. The hospice aide is not there all day but just in the mornings to help get her dressed and to check to see if everything is ok. Hospice nurse comes 2 times a week to check on her and her progression which has been VERY slow. I don't understand why some people go down so fast and others last for years as in my mom's case. Maybe it's the difference between dementia and Alzheimer's. Which ever one it is Deeandfam....I totally agree.....It's truly cruel and evil. Good luck and God Bless everyone......
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He probably will not notice where he is, but if it gives you peace of mind and your mother, then take him home - nursing home. Septic infections are very bad for brain health, and I suggest hospice be called in. I'm sorry you are having to go through this as dementia takes its toll on everyone.
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From my experience every illness or medical procedure that a dementia patient has seems to advance their dementia very quickly and anything that requires anesthesia is really bad. However, there are times when it is necessary - and sounds like your Dad really needed the knee fixed. Did they put him under to do it - were they aware of dementia. I had a hand Dr who was willing and ready to do carpal tunnel surgery on my LO - on both hands until I reminded him that he had dementia - could not walk and only strength that he has was in hands and arms - the Dr then backed off and recommended steroid shots for him.
My LO had to have stints in heart arteries and that was necessary - but it really took a toll on him and advanced his dementia. It is very sad that they can fix their bodies but it is at the expense of their brains.
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I don't think there's any easy answers to that question. Our bodies age and wear out in their own time. Only medical intervention has kept many people alive long past their "time to go" so to speak.
Daddy was in hospice for only a month or so. And that long only because he refused to die during the holidays. We fed him popsicles and sips of Gatorade, he threw up pretty much everything else. My brother is an EMT and "snuck" my dad a couple of bags of IV fluids so he could have his wish of not dying during Christmas. He was on round the clock morphine and topical Valium so he could stay calm. He died 45 minutes into New Year's day. We don't consider that a holiday! His death was a beautiful release. I think, depending on your belief system, hospice and the inevitable outcome can be beautiful and sweet. THANK GOODNESS for Hospice care. It helps you to know you are keeping your loved ones comfortable to the end. Runner---hang in there. Your plate is so full. (If your parents are not aware they aren't in the same place--moving your dad sounds really tricky--leave it be. Harder on you, but maybe better unless he improves a lot.)
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If my partner's doctor recommends or suggests Hospice, it will be done asap. I look forward to his having constant care and being treated with dignity. He lives here at home with me and it is very very hard to care for him. I am SO tired and will welcome the help. He has Parkinson, serious pain issues, needs help dressing and a horrible rash that never goes away. (so pills that might help are being withheld). He is SO ready to go. I want this time to be a good time for him. My mother was on hospice and I always say how she died with dignity. She gave me a lesson on how to die. He is getting some shots in his lower back at the surgery center in 2 weeks. I don't know how this will affect him. But, I think it is close to that time of calling in hospice. Keep us informed as we all need advice.
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Sorry for your circumstances. It's tough!

Many here have given you good advice. My only addition would be to be aware that Hospice is not the same everywhere. You need to explore Hospice and pallative care, if available, in your area and evaluate/compare which program, if either, would be of most benefit to your father and you. For instance, in my area Hospice personnel are all voluntary and can not, do to lack of adequate staffing, provide 24/7 care. Here, it is offered in our hospital..in-patient hopice care. They can only do 1-hour check-ups in the home. Hospice has a limited role, but still in charge, and you have to follow their rules. There are rules to follow once you agree to Hospice care. You may not agree with these rules, especially when it comes to your father's lack of eating.

Hospice will/should meet with you before any agreement, to explain how it works.

I wish you and your family the best. May peace come to your family.
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Yes I agree with Wddle. Our Hospice can administer meds, where some cannot. The hospice will also instruct you how to administer the meds that are used to control pain etc. Our Hospice is volunteers, but our nurse is paid as is our PT by our insurance.
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I'm sorry to hear about your dad. Sepsis is very serious and some patients don't bounce back. As a former hospice nurse, I watched many patients experience the natural decline of aging, accelerated by serious infection. As the elderly decline, it is not uncommon for them to sleep more and eat less. They can lose their gag or swallowing reflex related to this decline or other disease states like strokes. I certainly agree that it's helpful to keep your parents as close as possible during these difficult times. Those relationships are particularly comforting to each other in the later stages of life and physical decline. The tricky part is finding a close facility to accommodate that contact. Sometimes you can arrange for them to share a room if the financial resources are available, depending on the physical status of each spouse. God bless.
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Runner, you probably feel like you've dropped into some level of hell. I concur with those who advise bringing hospice in sooner rather than later. End-stage dementia is a more physical ailment than previously thought, and they lose the ability to participate/cooperate in medical procedures and treatment. All the poking and prodding are likely to frighten them. And what's the point? Your best bet is to make him comfortable with palliative care. Make sure his emotional needs are met and if that means getting him close to your mom, insist on that. They should be able to deliver hospice/palliative care in virtually any setting. He probably doesn't want to be in the hospital, you want him to be with your mom, so set up a meeting to get him moved, stat!
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In my FIL case, hospice was with him 24/7 for about 3 weeks before he passed. Up until then it was the facility aids doing what they could. Dr. suggested hospice and they were wonderful. That's in Texas. Best of luck and many prayers.
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End stage dementia patients can require 24/7 skilled care, because as they deteriorate, they require complete care.
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Absolutely agree with the other posters who said check on the hospice first. Make sure you are ABSOLUTELY CLEAR on what they will provide and what they won't before you sign anything. I was green on this subject when my mom went on hospice. The one recommended from the hospital was more than happy to give pain medicines, even when it was not necessary, imo. They had no intention of doing anything that would allow her condition to improve except on her own. Unless there truly is a big difference in hospices, I would not recommend it to any patient unless they were declared imminently terminal.
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I lost my a grandparent at a nursing home some time ago due to their gross negligence. They were indifferent to her needs. They did not help her with all her medicines. They did not help her to the bathroom and so she was complaining of belly pains everytime we saw her. She could not see and so the animals there said that she was deaf. They did not want to change her clothes, but yet they kept her there because she had " good insurance " as their social worker said. Her insurance was paying up to $ 500 dollars a day for care that she never received. I had to change her clothing and help her to the bathroom. The list goes on and on. Whoever says that hospices, nursing homes and hospitals are the best are either idiots who don't know what they are talking about or rats that work in those places themselves. I saw it all with my family and it was disgusting. They will discriminate against your loved ones because legally if your loved ones are over 100 the law protects those beasts in nursing homes. That is the great United States system. How do you like that? In your case Runner123 let your father sleep. Sleep is good for them. I know from experience that if they do not sleep they will start to hallucinate and their health can become affected. I hope your dad's dementia improves after the infection in his leg goes away. I would not recommend that he goes into a nursing home or stays in a hospice if you have more family who can help out or if you can pay someone to help you, but FOR SURE if he is close to 100 and cannot move you will be signing his death warrant if he goes into a nursing home. Time and time again here in my state I hear about nursing home abuses and there is nothing that we can do about it. Our politicians dont care about it and our governor protects such institutions. If you love your dad and you can avoid nursing home then let him stay with you. I took care of my grandparent for 35 years myself. I did not even raise my own family because I loved her with all my heart and soul. I have seen what greed does to these animals who work in the health care field and they know they can hide behind their licenses or inside the name of their institutions once they kill someone. I think you get the point. May God be with you and your father in these trying times. Read up on your father's condition as much as you can. It will help you also made the right decisions.
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In answer to your question - I almost forgot - that you want to put your dad with your mom, some people here are advising you that it is a good idea and are also saying good luck to you. Guess what. I would have to say good luck to you too about this. My mom broke her hips and I had her in the same nursing home as my grandparent at the same time trying to get physical therapy too and guess what they kept telling me? That they did not have the staff to be bringing her next to my grandmom yet they had a volunteer office. I had to be the one to go and look for her then bring her over into my grandmom's building. This shows you the type of beasts they have in these places. The next time I hear someone talk about a nursing home or hospice believe me I will know what to say to them. Take care
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I must say everyones response was very helpful to me with my mom in law diagnosed with dementia in January, she has had ups and downs since then and her doctor recommended hospice, I was apalled!! I thought mom is not on her death bed, but thank you everyone to explain your experience with hospice! we do not have a hospice facility where we are located but they will come to your home which is where mom resides, with us, so I will look into this in hopes of improvement with her current condition, and yes, I do agree hospitals are not as equipped for dementia as one would hope they would be. thanks all!!!!
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