My grandmother is in stage 7. She lives at home with care from an agency, and we also pay someone to manage her care. The level of care now is good. A bit of it is payed for through LTC insurance. If we move her into a nursing home, it would be totally payed for; we would lose the expense of the aides and the manager. The doctor that visits her said she gets good care now, and could still live years. She commented that were she to move into a nursing home, she'd be dead in six months, because they wouldn't make sure she was turned enough, that she'd eat well, etc. I feel its unwise to spend hundreds of thousands of dollars to keep her at home if she can get as good of care in a nursing home, especially when my grandfather may still live another ten years and need those resources. However, the way the doctor put it, it makes me feel like we'd be giving her a death sentence to save money. Was the doctor right? Do some nursing homes provide even better care than home health care agencies? Should we just stick with what's working? Where should I look for the best nursing homes (she is in Dallas, TX)? What about the increased risk of infection? If we move her, now it's like since the doctor told us this, it'd be our fault if she died soon. Thank you very much for your input.
My uncle stayed home for many years. He had a live, plus I would help durning the week to give my aunt a braek. It took her a very long time to decide to put him in a home. She decided Homeland. SHE visited many for a year. Home land proclaims to be the best in the area for years. My uncle died within 2 week. They pureed his food which he never ate to feed him faster. He was always slumped over in his chair in his room and slept. He unded up with a urinary tract infection and a bad case of the flu. Everyone is different it was too soon for him. I spent many days with him.
The following user gives a hug of support to mverr: stephentinnin (03-26-2012)
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Steph, placing a loved one in a good care facility is not a death sentence. Yes, there are good facilities that will love and care for your grandmother. If per chance she does die shortly after being placed there is no assurance it would not have happened if she had been at home. We can't foretell the future and we can't place a one on one blame game with what happens down the road.
In home care is more expensive. Yet it may or may not be better than a care facility. It all depends on the individual care givers. I have seen some horrible in home situations and some horrible care facility situations.
What you have to do is to be vigilant when you chose a facility for your grandmother. Don't just go in, listen to the glossy sales pitch, and make a decision. Ask to visit the facility several times. Go in unannounced and observe. Go at meal time, late in the afternoon, in the morning, at shift change. Visit without a sales rep and just walk around watching. Hang around the parking lot and talk to family members entering and exiting the building. You would be surprised what you can find out if Administration is not in ear shot Sounds like stalking and it is. You have to get beyond the sales pitch to find out what is really doing on in the facility. Check the state records for deficiencies and star ratings. Ask to see the license and certifications. They should be posted predominately including heath ratings and facility ratings. Check blogs for comments about the facility. Check with local agencies to see what their opinion of the facility is. Find someone with a loved one there and ask their opinion. Ask about the staff. What is the average employment time. You do not want a facility with a lot of turn out in the staff. Stop and talk to staff members not just the admin. Watch to see if the care staff interacts with the residents. Is there love present or just busy bees doing a job. Ask to speak to the nurses and ask what their priorities are. Ask them why they are there. Is it a job or a passion? It will not be long before you get a feel for the facility and what they can offer. Remember that the admin doesn't give the care. It is the care givers on the floor that are the most important.
Yes, it is a lot of work but you are placing your loved one in their care and you need to know everything there is to know up front. As you work through the process you will quickly get a feel if there is something wrong or something right. If your gut says no then move on to another facility. If you gut says yes then keep digging for a while.
I do believe the doctor has done you a HUGE injustice. There is no way he can say what he said with certainty. They told Dad that about his mother. A month or so later she fell at home, broke her hip, and died within the month... at home. Did she die because they kept her at home? NO! If she had been in a care facility she might not have broken her hip. But you can't say that by not placing her that it made the difference. My mother's mother was at home with care staff and Mom believed just what you said. She had to be placed because of an infection and lived well for another 18 months. Mom assured me Dad would die if we placed him and he lived for 2.5 years. Mom assured me she would die if we placed her and it has now been 5.5 years.
There is no right or wrong answer in this crazy game. There are only decisions made on good information that are the best decisions we can make in the moment. Finances are important as well. You have to be responsible and make the money last. You can get good care in a good care facility cheaper than in home care. I ignore those comments by jaded people like your grandmother's doctor who make off hand comments that pile on guilt. Start looking at the care facilities available in your area and see what you find
PS... don't just look at nursing homes. Check into locked units that specialize in dementia care and also home resident care settings. There is a new wave of home resident care that is excellent. They are usually smaller and privately owned. I might make one more suggestion. Try to find a facility that is a non profit or owned by a committed individual rather than a corporate facility. They tend to be at the top or bottom of the ratings list. Fine one at the top
Last edited by Gabriel; 03-26-2012 at 07:27 AM.
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Has she been diagnosed with dementia? Is it Alzheimer's stage 7 like severe stage?
For severe stage, there would be 1-3 more years. It depends on her situation. Can she walk, talk or eat without choking? Can she read or write? I guess she may not be able to do anything now if it is severe stage. My FIL is in severe stage. It is hard to survive long at severe stage given that the person cannot walk/talk/eat/think.
I would like to suggest that if the doctor says 6 months in a NH, it probably means overall she may not have more than 3 years.
That is, if you consider her health situation. She would be prone to get aspirational pneumonia and UTI and etc. Certainly someone has to bathe her at least once or twice a week. She hates water so it is also hard to help her over toileting.
Also any trauma in the hospital or a new home could also kill her or make her dementia worse. It is hard to say.
When we wanted to move my FIL, the home care nurse was also quite stubborn telling us we cannot move him to a home until he does not care (that is when he is totally in hospice or something like that.) Well, home care expenses for 24/7 was too much and he had no LTC insurance. He has money but home care was getting worse. My FIL could no longer be in an open environment like his old house. He is/was too confused and he bugged the neighbors also. He would need a ramp but the house was too old and has stairs everywhere.
In the end, he got sicker at home. He went to the hospital so many times that the neighbors were aware of the 911 trucks and etc. The GP was not good enough. So things were not working out at all. We know a bad home will make him worse. So we looked and looked. We decided to find a memory impaired home with a good local reputation. It is a private home also (residential care plus nursing.)
We waited 9 months (on the list) and then we were able to move my FIL in the summer, 2010. Fortunately he got better that summer and we were able to fly him to be closer to us in another state. In this case, my FIL thought he would come to "work with" my husband. Your grandma may need another reason to be moved.
My FIL's doctor suggested a nursing home to avoid too many trips to the hospital.
You need to know this is a personal decision by the family; the doctor has no business to play God and tell you what is right or wrong.
It is up to the family. If you can provide a good home care like what you have and have no issues of money given insurance, home care is for sure a good option.
Home hospice is also possible in the future.
You have to make sure her home is safe enough for late-stage care. If you feel that home care is good, keep it.
If you feel that a nursing home will help, find a good one. The advantage of a good nursing home is that she would get peers and socialization. My FIL was home alone eating on the couch. Now in the new home, he eats with everyone in the cafe at the table. He eats much better now. Even though he is at severe stage and does not talk much now (just a few words to respond and he only talks mutually on the phone with limited expression,) he still loves to be with the peers to feel secure. He is not a gregarious person but no one likes to be lonely in a home. Kids are not the peers.
Where my FIL is, he is well-fed and well-cared for. The ratio is 1 caregiver per 4 patients. My FIL loves this home and he has no idea it is a nursing home for retirement (he never accepts retirement and he is 91.) The key is to find a good home.
Last edited by ninamarc; 03-26-2012 at 10:51 AM.
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Hey Stephen - You've already gotten great advice from great people here on the boards. Every situation is unique. I'm sorry you're having to make these tough decisions. I was durable POA for my stepdad and had to make these types of decisions as well. Turns out an excellent adult family home was the best option for my stepdad. He did not do well in a larger skilled nursing facility.
I'm in the state of Washington, and I know the laws are different, but in our case I was able to get state aid that paid for about 75% of the care he received in the family home setting. He passed in January, but the last year and a half leading to his passing, he got to live in a home setting where we knew the caretakers truly cared and dare I say loved, their patients.
I'm wishing you all the best as you go forward. You do need to keep the finances in mind. My mother is alive and healthy and I had to consider their limited resources, although I feel so lucky and grateful that I found such an excellent adult family home. As Deb said, there are good and bad nursing homes, good and bad adult family homes. You really have to do your research, use all of your senses when checking places out, and check back often.
Don't let what the doctor said scare you. That doctor does not know what she is talking about! As the others have said, none of us can predict the future. You just have to make the best decisions you're capable of and go forward. It's a big job and I wish you the best as you move forward. Let us know how your'e doing!
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One more thing, we all want the elders to live at home and die at home. No one likes to go to a nursing home. Back home it is one-on-one and personal. She would see her family all the time and even live with family members. This part is not something the NH can provide.
So there are pros and cons. It all depends on how grandma is.
If she has LTC insurance, home care expenses are not that bad. Of course, the management of the caregivers is another issue.
If you are interested in the life span for stage 7 AD, please check out the website for Fisher center that does Alzheimer's research. Check out the stages in the menu and esp. the 7 clinical stages.
It describes in details how each stage is and rougly how long.
Stage 7 could last 6 years if the care is really super provided that the person has no other disease and does not die earlier.
Usually it is hard to live through stage 7 given severe disabilities.
Thank you so much for your kind, thoughtful replies. I only yesterday stumbled upon this board, and wish I had found it long ago. What a wonderful resource. I am happy to have somewhere to turn for the difficult questions, and hope I can help someone else with my experiences. To clarify where she is in the disease, Grandmother appears to me to be somewhere around stage 7a-7c of AD. Because of AD she lost the ability to stand up without assistance a few years ago, and has had to be lifted for a couple years. She's down to one word replies mostly, and usually cannot voice what she is thinking; she'll say 'where is .. mumble ..mumble ..mumble?' But just today, she asked me "Where do you live?" Usually, she doesn't know who anyone is, but occasionally she'll know her husband's name, or a daughter's name, and rarely she'll call me by name, but she can't verbally identify her relationship to us. She doesn't know where she is, and will sometimes ask, "Where are we?" but I believe she knows its a familiar place. I have heard her say many times, "How will we get home?" or "I want to go home." She sleeps a lot, and has her eyes closed a lot even if she is awake; I think she can't really handle the visual stimulation. She also hallucinates a lot, and can't really vocalize it, but they are mostly pleasant. She'll say, "What's that ..mumble..mumble..mumble." "Would you . . ." She fidgets a lot with her blanket. She can eat without choking; she will eat finger foods on her own if prompted to do so and continue. She cannot read, write, or focus on the TV. She is uncomfortable a lot of the time. Part of me doesn't want to change from home care because it seems to be working, but it's so much money. There is a limit to how long the money will last, and then there is my grandfather's future needs to consider. Thank you all again so much.
Thanks for the detailed info. about your grandma. My FIL also closes his eyes right away if he refuses to look at photos or join the activities. This started in Nov. He no longer engages with the caregivers personally. This shows that he can no longer understand or communicate with the outside world. It is good that Grandma can still eat without choking. This is kind of odd because my FIL started not knowing how to get food or desserts in his kitchen (he used to do that by taking all the bags and eat them all) in 3/2010. Now he eats pureed food but regular desserts are ok to him.
If she can eat by herself, it is good. Eventually she will have choking problem. I don't mean choking with an episode - I mean she would drink/eat and cough a little bit right afterwards. You may need to observe it. If she coughs after eating/drinking, it is a sign of "choking". My FIL has pureed food to prevent him from choking. The site on Fisher Center didn't talk about choking and I think the site missed it.
My FIL is chair-bound and is in the wheelchair. The funny part is he has all the symptoms now for 7a, 7b,7c and 7d. It is not in the order necessarily.
I am sure the family can decide the best for grandma. Grandfather is certainly needed to be considered. Maybe they can both live in the same facility. If grandfather wants to keep her home, it is up to him if he is the main caregiver. It would be best if the POA (you or your parents) can consult grandfather and discuss this.
At this later stage of the disease your grandmother can be comfortable in a care facility. You, your grandfather, and the rest of the family could visit often and spend quality time with her. You might want to make her doctor aware that she appears uncomfortable much of the time. That can be a sign of pain. As you said she can not verbalize how she feels so we have to interpret the clues she gives. Something as simple as a hemorrhoid can cause distress when a little cream can bring great relief. It could be anxiety which can also be treated. As for your original question.... investigate thoroughly, find the best facility possible, and know that a move is not a death sentence