I keep reading about how hard it is to make the decision to place the person they are caring for in assisted and/or memory care. Of course I would not want my loved one to live outside his/her home before necessary, but I read horror stories about the behaviors, some of which would be difficult, even in a hospital setting, the complete and indescriminate incontinence, the lack of mobility and ability to shower or the refusal to do so, as well as performing any type of personal hygiene, the constant angry outbursts and the wandering out of the home at all hours, the falls and trips to the hospital and problems with eating. Of course there are numerous degrees of all of these behaviors, but the dementia is always there and as it consumes more and more of the patient's day and night, I doubt that moving the patient into a safer environment than we can provide in our homes is an abandonment, but an act of love, and can, in most cases, result in a better quality of life all around as the caregiver can regain a better sense of peace of mind and visits become something that are less filled with frustration and emotional stress than the constant exhaustion of keeping them at home. The stories about how another parent exacted a promise not to "put mom or dad in a home", and the feelings of guilt I hear are not reason enough to keep from providing a higher level of care when we can possibly manage it. When the patient no longer believes that they are at home anyway and continually asks to go home and does not remember who you are as their family member most of the time, the loved one should be able to adjust to a new environment as long as there are familiar items around. My husband is not at that point yet, though he is close in many of the ways I have described, but I know it is coming. And I know that it will never happen if I cannot find financial resources. This is not a matter of wanting to "dump" responsibility onto someone else in the vast majority of cases. We constantly hear about and talk about caring for the caregiver and in my support group every one of the caregivers are pretty much the same age as the patient and trying to deal with their own health issues while giving the best care possible, yet expressing such determination about keeping the loved one at home, and sometimes being made to feel guilty by family members who come by once in awhile for an hour or two and have no real clue as to the extent of the dementia-nor do they really want to know, as they are in a state of denial. I just want to say that with any long term and incurable illness, there comes a time when what is best for the patient is more important than your feelings of guilt. So I guess that this not really a question, but an observation.

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I read your post and thought about it for a long time. We have a mom who is declining, rapidly at times, then plateaus, then another decline....but she always rallies and comes back, never quite the same but at 88, we don't expect much more.

My brother has completely taken over her care, I'll never know why. There are 4 other sibs, he simply stepped in and made himself her "slave". He complains A LOT. But any offers of help, he shoots them down. Some kind of mental illness going on with him to "need" to have mom there and under his control.

WHY don't "we" move her to better, safer, cleaner surroundings? Well, she's lucid and although she has her "dotty' days, she can still do what small things she needs doing. Brother is run ragged with her demands and such. I KNOW that this is exactly what daddy did NOT want for mother, or for us.

3 of my sibs are simply MIA. They don't call or engage with mother. Brother has scared them off, for one, and in part, they are simply disinterested. I've been asked to step down and do zero care for her. Yep, the guilt is enormous, but there's nothing I can do, I have no "power" or say (I'm just a 'girl').

Why don't we 'act' on what we think is best? Good question and no real answer. As long as our LO is in their right mind, we can't, legally, step in and make the changes.

I'm just very sad, somedays, as I see my mother's QOL disappear, but she is luckier than most. She has a safe place to be, people around her and 3 TVs :) That's all she really wants. What I 'want' is totally immaterial. Accepting that I cannot change anything and never will be able to 'help' her is frustrating, but it is what it is.

I used to think that I would do anything to keep my mother out of a nursing home/care facility, until now. My mother has Stage 4-5 Dementia, is paranoid, refuses to shower, incontinent, calls me and tells me I've "been a prostitute since I was in high school" (which was hurtful at first, but a week later down-right hysterical), and that I'm "on the roof trying to get into her house" (I live 60 miles away). Geez! I am grateful for home care personnel who do their best -- they keep me centered -- but I know placing her in a facility is just around the corner. I'm OK with it.

Amen, JoAnn29

One thing that needs to be addressed is the Media telling people "you can stay in your home". I used to hear a son say "We want Mom to be able to stay in her home" A son who lived at least an hour away and didn't see his Mom enough to see her decline. A neighbor telling him she can't live alone. Her neighbors were her age with their own health problems. She needed to sell her house and move into an AL long before it was done. The elderly get to the point that their home is too much for them. They need to look for options.

I don't feel guilt that I placed my mother in a nursing home, but I do feel sorrow, frustration, anger at the "system" and my own inability to rise to the task. I knew things couldn't go on as they were when mom lived with me and I know that the nursing home has all the infrastructure to care for someone with advanced physical and mental decline. Still, we make the choices we do because we have no better ones, we are caught between that proverbial rock and hard place. There is nothing good about the quality of life offered to the majority of those in my local long term care facilities, they are truly just marking time until their time runs out.

She1934, great points in your post. I agree completely. I too am perplexed at times about why perfectly normal and healthy family members seem to be filled with self loathing, guilt or some kind of denial about appropriate care. From my reading, I've found that some people get this way by virtue of "caretaker fatigue." Apparently, the exhaustion can cause your mind to think that way. Other times, I wonder if it's a cry for help. Perhaps they are afraid to ask for help, so they claim they feel guilty, -out of desperation. And still other times, I think that the caretaker is not properly labeling their feelings. They call it guilt, when in fact, it's annoyance, anger or resentment and they just can't come out with it. It's hard to say really. Nonetheless, I hope that sites like this, with on hands caretakers like you, continue, as we need the wisdom that you can share.

You are spot on!
How eloquently you describe the struggle because you know first hand.

We can't make promises to our loved ones (that we will keep them at home with us), when WE can no longer physically and or mentally continue to do the work.

The word "guilt" (and the feeling) should be removed from every caregivers vocabulary.

You can't be expected to do more more than that which you are able .

Call Medicaid (Medi-Cal in California) to see if he is eligible. Also call an elder law attorney. Ours was free through the Senoir Center in my mom's town. We gave a donation for drawing up POA contract.

Check at the desk of your local library for a Senior Guide. Lots of info there.

God bless you both.

I'd respond to anyone trying to guilt me, "Would you spend a day at my house changing his poopy diapers so that I can have ONE day off?"

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