Follow
Share
Read More
This question has been closed for answers. Ask a New Question.
Find Care & Housing
I agree with Moxies--Not not every one is better off at home. I had my mother with Alzheimers home with me for a year and it almost killed me. I had no life. There is no such thing as a live-in, 24/7 caregiver. Any caregiver will still only work 8 hours a day. They have to sleep and have time off too. I got outside help 8 hours/day, which left ME on duty the other 16 hours. Everytime an aide cancelled or called in sick, it was ME who had to cover the shift until the agency found a replacement. It was ME who had to train every new aide that came into my home. An aide lasted an average of 2 months, then they would find another job or whatever and I had to train a new person and make sure she and my mother got along. These aides from so-called professional agencies are basically housekeepers. None of them had any training for dementia patients. And God forbid your mother falls or gets a cold, or flu etc. It will be YOU up all night, bringing her to the doctor, picking up her meds, doing her physical therapy, helping her to the bathroom. I did all the grocery shopping and meal preparation. Aides dont cook, they just reheat. Keep her in the SNF and visit often to make sure she's cared for. Meds help! My mother was on antidepressants and Trazadone which were a great help in keeping her calm, but not drugged up. Seroquel is also a good option for dementia. The Aricept is a preventative medication--it doesn't keep them calm. Good luck.
Helpful Answer (5)
Report
bundleofjoy Mar 2022
dear burnoutgirl,

hug!!

”I had my mother with Alzheimers home with me for a year and it almost killed me.”

:(
sounds extremely tough.

“I had no life.”

wishing you well!!

———

regarding drugs, one must be careful: sometimes for example, they might make elderly people fall more (seroquel, etc.)
(2)
Report
See 3 more replies
Wow! You certainly have gotten a huge response to your post! It sounds so much like what I’ve been going through with my dad (age 90) with dementia. He spent about 2 years on and off trying different places to stay (none of which he was happy with as he wanted to be home). He was in an independent living facility for a while (less than a year) and then moved to an AL community. Although he was never formally diagnosed as your mother was, we think he also probably has vascular dementia. Like your mom, he still has the ability to connect, remembers names of those around him, and sometimes can remember events, but he most certainly has dementia, as his short term memory is nonexistent, and he lives pretty much in the moment right now. Don’t stress about the replies of those who obviously do not understand what you are going through and are expressing horror about having her in a NH. From what you’ve shared, the home you mom is in sounds competent, and has caregivers that are considerate and caring. I don’t think mom would have been happy at home (with less support care and more independence)if she has been a fall risk in the past. She’d probably just end up angry that you aren’t there enough to hep her, or that she’d fallen again, etc. My dad was with us in our home for a while and wasn’t happy there either - he wanted to drive on his own and was furious that we didn’t understand that he was perfectly competent. This coming from a greatly handicapped elderly gentleman who could barely walk with a walker at the time, and could not get into or out of a vehicle without assistance. Dementia patients like your mom and my dad can suffer from anosognosia, or an unawarenesses of their condition. They actually truly believe there is nothing wrong with them. Hence the reason many responders here warn you not to try to argue with her - it will not convince her as she believes she is fine and that’s why she thinks you are out to get her. Sounds like you cannot afford AL. One thing that helped calm dad a little was giving him choices where we could. While he was in rehab we showed him several places he could move to. Being able to be a part of the decision was very helpful for him. Maybe there are choices mom could take part in at the NH? Like a new room with a different view, or events or activities? I also would advise you to check out Teepasnow.com. Teepa and her organization helped me tremendously. She has many short vids that are easy to process when you are stressed and depressed as a caregiver. I couldn’t handle reading a whole book on dementia, but a 12 minute video was doable. Many of her instructional videos are free to watch on YouTube. She is a guru when it comes to dementia care techniques. Every dementia patient is different, and some handle stressful situations with the fight response. My dad is that way - and like your mom, he lashes out at and blames others when he’s afraid. He also hates losing his independence, and will get snappy when I do something for him (no matter how good my intentions) without asking. Teepa addresses these types of situations by showing you responses that do and don’t work. It’s really tremendously helpful. Also - try to get the care you need for you. You have cared for mom with great diligence so far, and will probably continue to do so because it’s who you are. Just remember that you can’t care for her as effectively if you are run down, worn out, or even worse, completely burnt out. Set up visits with her from your friends, moms friends, and family you trust, to give yourself break days. I totally agree that it’s very distressing when they distrust you, and attack. But it’s not their fault, and they need people who love them and care for them to visit regularly to help reduce loneliness and depression. It doesn’t always have to be you, though. Sending hugs 💗🤗!! You’ve got this!💪
Helpful Answer (4)
Report
autumnsfalling Mar 2022
Thank you for your note - it is helpful and supportive! I didn't want to get into all the details, but will provide a bit more background. My mother has no assets - none. We supported her 100% for the 12 years prior to her stroke (living with us). We are not able to provide the level of care she needs in our home. The safest and healthiest place for her is in the skilled nursing facility (she is on Medicare and Medicaid). They are wonderful there! My visits are always unannounced and she is always clean, hair brushed, etc. She has a lovely room with her bed next to a big window looking out on a pond surrounded by trees. She loves that view. What she doesn't love is not being able to make her own decisions. Unfortunately, even when she was living with us, we saw her decision making ability decrease over the years. She started having trouble driving (she got lost going from the library to the grocery store which is 1.5 miles apart and both are about 3 miles from our home). We were having conversations about taking her keys away when the pandemic hit and she stopped driving anyway. She was starting to have trouble caring for herself and was having more and more difficulty navigating stairs, forgetting that she was cooking and go do something else, etc. I work from home and 'watching' her 24/7 was becoming a 2nd job for me. We believe that her decline was due to the mini-strokes she has had over years. No matter how much we tried, she adamantly refused any medical care whatsoever. It was only when she had her main stroke that we were able to get her to a hospital.

The nursing home she's in, really is wonderful. They have lots of activities, she socializes there more now than she ever has before. Her life before was pretty closed off (by her choice) and her only interactions were just our family and the internet and books (we had always encouraged her to get involved with social things, but she refused). Now she does activities, crafts, social events. They have a library, she had tried to read books there in the past but her brain doesn't allow her to absorb what she's reading so now she just sticks with the daily newspaper (but doesn't retain what she reads in it).

She cannot walk, even with a walker, unless an aid or therapist is supporting her with one of those belts. She can only transfer herself from one hard surface to another (like the toilet to wheelchair - but this is only happens occasionally - most of the time she is fully dependent on an aid helping her transfer), she cannot do any of her ADLs on her own. It's awful, but she cannot leave the facility for her own safety. Even if we got in-home care, she needs to be watched 24/7. Our home is not safe for her. Her coming back here is out of the question.

I agree - it sounds like my mom has anosognosia. I've been reading about it the past few days and it sounds like I'm reading about her. I'm going to ask her nurse today if they've done a capacity evaluation on her and if they haven't done a formal one, I'll request it. I believe they have done one already, but I don't have a copy of a Dr's letter. I think that it would be good to have on hand.

I've asked my mother many times if she likes the people, activities, etc. And she does! She even likes the food! She can only have softer foods and orders the salmon most days for lunch. Her liquids have a thickener which helps her swallow them - she even likes that (the nurses said that most people dislike the thickeners). She said that it's easier for her.

As for other support for her - there really isn't anyone else. Her brother calls her occasionally but he lives on the other coast and she hasn't seen him in about 40 years. My sons and I visit (my boys really enjoy the visits) and she has made friends there (waves to them when we pass wheeling her to the atrium for visits). She just wants out, she wants the 'old life' that no longer exists for her.
(5)
Report
See 2 more replies
Louise315,

I'm responding to your comment to me lower on the thread. I challenge you to find me an elder in a nursing home that hasn't been diagnosed with dementia. I would be very interested to know that unicorn's story. I'll call them a unicorn because God knows they'd be the only one of their kind left in existence. Terrific.
Medical personnel in nursing homes take their jobs very seriously and don't 'add labels' without serious consideration?

LMAO!!! Seriously, I almost choked on my coffee when I read that. In what universe is that true? You may have gotten extremely lucky and found the one 'unicorn' of a nursing home for your father.
My father was in two different ones. The first was $10,000 a month. The second was $12,000. I still had to be up both of their a$$es 24/7 and there was still gross neglect. He still suffered serious injury. Please, most of the medical personnel or "professional" staff, do not take their jobs seriously. I know that some in a nursing home really try for the residents because they truly care. They are few and far between though.
When the $12,000 a month nursing home petitioned for conservatorship over my father the doctor their facility uses diagnosed him with moderate but rapidly advancing Alzheimer's/dementia. I asked the social worker during the conservatorship hearing the dates of when their doctor examined him to conduct the testing for it. The judge gave her a friendly reminder that we were all under oath and not to forget that.
Turns out the doctor who 'diagnosed' my father had never even seen him.
His diagnosis of Alzheimer's/dementia was based on the social worker's notes who was sent by the nursing home, with their lawyers, to the court hearing.
If social workers are able to make a medical diagnosis, wouldn't they be doctors? They wouldn't need one to sign off on paperwork if they were qualified to diagnose illness and prescribe treatments. This was how much "serious consideration" is given to patients in that $12,000 a month nursing home. So serious, they let their social workers diagnose and "add the labels".
I won't get into the Medicare fraud and double-dipping on the billing here.
Many times there's no choice but a nursing home for an elder. This is the sad but true reality for many people. If it eases your mind to believe that the patients are the top priority of a nursing home, then God bless. I hope you find comfort in that.
Helpful Answer (2)
Report
bundleofjoy Mar 2022
good warnings!

we must learn from each other.
(1)
Report
See 1 more reply
I'm a senior and in a nursing home. I have not been diagnosed with dementia or any kind of cognitive impairment.
Helpful Answer (4)
Report
BurntCaregiver Mar 2022
Are you a rehab patient who will be released at some point or are you a permanent resident?
There's usually a very big difference in the care and attention between a rehab stay and a custodial, room and board resident.
(2)
Report
See 4 more replies
Your reply to Louise 13 sounds just like my mom… get the capacity done.

I tell my mom when she complains.. sorry mom, we are not moving… my mom will never be content anywhere. Now occasionally she tells me she likes where she is. Finally acceptance..

This journey is so difficult..
Helpful Answer (4)
Report

LoopyLoo,

I know what I said sounds harsh. It is harsh, but it's also true. Elders in a nursing home who do not have people on the outside breathing down that nursing home's neck night and day, aren't going to be a priority patient. They are also going to get ripped off. This is how nursing homes operate.
Sure, there are some that are decent places who take good care of the residents and give them what they're paying for. I have yet to find the one that accepts Medicaid though.
Helpful Answer (1)
Report
LoopyLoo Mar 2022
I get where you're coming from; just seems you're still bitter about the whole experience. Which you have every right to be. But it's inaccurate and a bit arrogant to suggest people are just fooling themselves if they think their parent will be cared for properly in a NH.
(2)
Report
My FIL has a much more advanced dementia and he had been in and out of the Hospital for the last 15M or so. It's a long story but feels similar to my beginning so I am sharing. With Dad we tried our home, and quickly realized we couldn't give him what he needed because we both still work. We set him up with amazing full-time care that adored him, and still allowed him privacy while being safe. He wasn't happy with that either! His paranoia made him believe they were "squatters" sigh. Because we had not taken steps to incapacitate him when originally medically advised (difficult family dynamics with his brothers) he was able to kick out those caregivers, essentially. Then he one thing at a time refused to do his rehab arranged "care plan" stuff until nothing good was left and he was back to his wicked eat terrible, no exercise, no fall monitor ways. That lead to many more illnesses and injuries and just bad situations witnessed by neighbor's but they were not quite enough to land him the offer for help with incapacitation again.... Originally we felt like we had to give him that chance to do it, or show us he could. We were wrong, we should have listened to the Neurologist and the rehab. Not doing so led to over a year of constant problems and worry, and it was not safe for him. We just didn't really want to see it at first and then we were not willing to go to War with the brothers to do so. Cut to late Jan where he almost died from pneumonia because he aspirated some food and passed out on his kitchen floor. Now he doesn't even qualify for assisted living, let alone home, he has to be in a Memory care because he got worse quicker on his own. He was incapacitated this time weather we wanted it or not, for his safety and actually I am grateful. He still wants to go home, but there is no chance, not even if we could get him to do a care person because he'd need constant monitoring. On good days he knows who we are, on not good days not so much but the one thing he always gets out is he wants to go home. He actually likes where he is, it's a very nice place. He likes the attention, people around, being fed ect. Yet he still just wants to go home so he can be naughty and he can't accept that was really bad for him. It's sad and I don't know if he will ever get past that. If we had to do it again, I'd do it differently. I feel way too much guilt that he almost died because we were trying to let him be, and therefore "be happy". Everyone has a different journey, a different situtaion just do the best you can with yours. Find a great Dr. and listen to them and your heart, I wish I had. Good luck to you!
Helpful Answer (3)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter