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These last few comments do make me think hard about my involvement. It's difficult, but thank you for your insight.
The chaplain just called me and asked if there was something that she is tormented or worried about because he's seen such a downturn in her mood and her overall behavior lately. I was very grateful for his insight as well.
He reminded me that sometimes they get "stuck" in a time frame in the past and that makes perfect sense. She has been talking off and on today and yesterday about her first husband, who was killed in the prime of his life in a freak industrial accident. I think they had argued before he left the house that morning and that has tormented her for decades. She was calling for him today. She kept saying his name and calling, "Help me, help me!"
It is so sad to hear. We have always thought that she never got over the shock of his death.
She was also talking about her boys as if they were very young, the age they were when their father died. She kept saying, "I'm sorry, I'm sorry."
How terrible it must be for her to think she is back at that sad time of her life. She had a lot of good times later in life - she had a good career, raised two successful and well adjusted boys to adulthood, had a long and at least financially and secure successful second marriage - but we have all always thought that she never really emotionally moved past that first love and the shock of his death.
Most people don't consider it, and they should. I don't know why hospitals don't educate on this more but I suppose theyre frightened they will be accused of secrecy or something.
Those old folk are already traumatized, losing their home of xx years.
So not only do they lose their independence, they also lose (it seems) all right to privacy.
Imagine being bed bound and unwell and people peering into your face wanting to know how you are on a regular basis? Then times it by however many well meaning relatives you have, each shift of nurses and carers, and you will get some idea of what sort of hell it is to be old, unwell, and dependant on others.
You can never just ignore the doorbell, ever again.
Lack of privacy is actually what kills them, imo. They give up all will to live and I don't blame them. Its a horrible way to die.
You know, my mom was always glad to see me when I visited, and I think she was always glad to see my sisters. None of us was able to do the visiting that KA is doing though. But I never, ever felt that she was not glad to see any of us. However, she probably had vascular dementia, and she wasn't paranoid. She was confused, and didn't recognize people well near the end.
And if the visitors create problems and make demands of staff, then of course they wish the patients would not have visitors.
However, since staff indicate that KA's MIL is always difficult and delusional, I don't think she needs to visit as often as she does, especially if the staff have her phone number and can call her if there is a problem. But it doesn't sound as if she can help them overmuch manage her MIL anyway.
I think the best way to visit anyone who is confined is to sit quietly and be companionable. I can't imagine sticking one's face into someone's else's face. That's just rude. But if the elder is quite sight impaired, it may be that family feel they have to put their faces close for identification. There are so many possible circumstances.
If visits are not meaningful to the patient, then I don't know why one would do them more than once a week. I do think that one should visit pretty often to make sure that the resident/patient is getting good care though.
In the case of KA, I doubt that her MIL in her present condition is traumatized by loss of her home. She sounds as if she is in later stages of dementia, which I think must be traumatizing, but surely she is in her own troubled world at this point.
You know, my mom was always glad to see me when I visited, and I think she was always glad to see my sisters. None of us was able to do the visiting that KA is doing though. But I never, ever felt that she was not glad to see any of us. However, she probably had vascular dementia, and she wasn't paranoid. She was confused, and didn't recognize people well near the end.
And if the visitors create problems and make demands of staff, then of course they wish the patients would not have visitors.
However, since staff indicate that KA's MIL is always difficult and delusional, I don't think she needs to visit as often as she does, especially if the staff have her phone number and can call her if there is a problem. But it doesn't sound as if she can help them overmuch manage her MIL anyway.
I think the best way to visit anyone who is confined is to sit quietly and be companionable. I can't imagine sticking one's face into someone's else's face. That's just rude. But if the elder is quite sight impaired, it may be that family feel they have to put their faces close for identification. There are so many possible circumstances.
If visits are not meaningful to the patient, then I don't know why one would do them more than once a week. I do think that one should visit pretty often to make sure that the resident/patient is getting good care though.
In the case of KA, I doubt that her MIL in her present condition is traumatized by loss of her home. She sounds as if she is in later stages of dementia, which I think must be traumatizing, but surely she is in her own troubled world at this point.
The nurses priority is patient care. Overworked and underpaid, they would be absolutely thrilled if family visits somehow translated into better care for the patient, but it DOESNT. It usually has the opposite effect especially with the elderly who, after all, have lost everything but their pride.
Patients also get agitated at all the visitors, trust me.
The older and more demented they are, the more useless and disturbing these strangers are.
Its all very well for others to say let the staff deal with it - but if you have a reasonably calm individual one minute, the next spending the night crying, pulling their hair, tearing at their drips, and wandering as a result of unnecessary agitation and excitement from well meaning individuals who get to go home, would you be quite so supportive?
In advanced dementia the person who benefits most from visiting is usually the Person Who Visits. They feel good afterward, duty done etc.
The Patient is beyond caring, even breathing can be traumatic for someone whos brain is literally melting in their head.
You are talking about patients who can speak and put thoughts together. Alzheimers patients often cant and nurses often aren't encouraged to say it for them.
Also, the carers on during visiting hours are usually NOT the ones on at night. If a patient has a bad night after every single visit, it may well not be reported or even recognized as a pattern especially if the visits are daily.
To clarify, I don't always even talk with her. Sometimes I intentionally plan my visits when she is taking a nap. That way I can check on her in a non obtrusive way. I don't even have to make demands on the nursing staff, because they are extremely attentive to her. So I just peek in on her and check to see if she needs anything about half the time.
The other half the time I try to be there at meal time, because she does seem to really appreciate someone cutting her food up for her or getting her a cup of coffee or even helping her eat sometimes. Plus - she likes eating for the most part and is usually in a better mood. I don't try to make her talk then - I just cut her food up, or whatever. Of course, sometimes she IS more talkative when she's in a better mood. Yesterday she was even laughing with the other residents when an aide came up and was sort of teasing one of them. They were all laughing at that point. I admit, that did make me feel good to see that smile on her face and that human interaction with the other residents.
I have scaled back on my visits that she's AWARE of because I did pick up on the fact that if she doesn't know who I am, she would surely think, "Who is this woman telling me she loves me or thinking she can touch my food?" LOL
I'll see what her social worker thinks. Honestly though, she's pretty much like this from what I hear, all the time. She has very few days.
Believe me, I'm not visiting her to make myself feel good. It's depressing as hell. I'm just trying to check up on her and bring her a little comfort in a very bleak world. Sometimes that comfort is just painting her fingernails (she likes that) or cutting up her chicken, I guess. Even if she doesn't know who I am all the time, she still likes those little things.
Most people don't consider it, and they should. I don't know why hospitals don't educate on this more but I suppose theyre frightened they will be accused of secrecy or something.
Those old folk are already traumatized, losing their home of xx years.
So not only do they lose their independence, they also lose (it seems) all right to privacy.
Imagine being bed bound and unwell and people peering into your face wanting to know how you are on a regular basis? Then times it by however many well meaning relatives you have, each shift of nurses and carers, and you will get some idea of what sort of hell it is to be old, unwell, and dependant on others.
You can never just ignore the doorbell, ever again.
Lack of privacy is actually what kills them, imo. They give up all will to live and I don't blame them. Its a horrible way to die.
I had a dream. The action took place some years from now, probably sometime after 2040. I am in a massive facility, similar to a large military base. But it was no military base. It was a massive facility for the aged, with thousands of residents.
I am at the edge of a large outdoor pool with steps in and steps out. Hundreds if not thousands of us are being led into, through and out of the pool. It is a sort of mass bathing operation. We are all naked. In the midst of the pool, I find myself in horror. I wish to die. I do. The dream ends.
I had a dream. The action took place some years from now, probably sometime after 2040. I am in a massive facility, similar to a large military base. But it was no military base. It was a massive facility for the aged, with thousands of residents.
I am at the edge of a large outdoor pool with steps in and steps out. Hundreds if not thousands of us are being led into, through and out of the pool. It is a sort of mass bathing operation. We are all naked. In the midst of the pool, I find myself in horror. I wish to die. I do. The dream ends.
I think you just got it.
These elderly are often used to doing their own thing for decades, including a basic human right of bathing in private.
Suddenly, its GONE.
Kathryn, the things you say about peeking in and helping to feed her, are what nurses WISH families would do. Actually roll up their sleeves and help.
What usually happens is the families create more hassle for the nurses, breezing in, demanding their parent be treated like xyz, breezing back out again, expecting everything to fix itself by their next visit.
Even mentally well old folk often come to dread visits. A place where folk are very unwell, dying even, and in come the rowdy family with their questions, prying eyes, demands for Better Treatment despite obvious overwork and capacity in most hospitals, then they breeze out again, leaving everyone upset and feeling like they are somehow failing, in The Most Difficult Job There Is.
Kathryn I cant emphasise how much your actual help in feeding MIL is appreciated by everyone in that place.
You've absolutely gone beyond the call of Duty, even if it were your own parent. I know how hard it is to stand by and watch.
But death has its own agenda, and will grind on regardless of anyone elses feelings and actions. Your MIL is in her last years, with her wandering quite probably her last months, especially if she breaks something.
Your visits mean little apart from the tangible help you give (which is AWESOME and hugely appreciated by staff, trust me - just maybe not so much MIL).
If you could somehow detach your emotions and think of her not as the woman you knew and loved, but as a tiny child that is not long for this world and already has much more proficient carers than a well meaning visitor.
Difficult I know, but it would save you a bunch of heartache in this phase and possibly pave the way to blessed relief at the end, instead of grief.
Alzheimers is a living death, but so is Advanced Age for many people. Those places are full of folk who are full switched on and all too aware of their physical deterioration. You wouldn't do it to a dog.
Also I don't think most folk realize how FRAGILE these elderly are. If you look at them harshly their skin actually tears. Some are living with broken unset bones as its considered setting them would kill them. A large skin tear, so easily done by the inexperienced, will NEVER heal, more likely infect, grow larger, and kill them.
They are literally tissue people. Utterly faded from the vigor and strength of youth.
Thanks. How about little compassion for these "troublesome" old people? My mother was in rehab following a surgery and became so wild with fear and anger that she had to be literally restrained. Once home and with someone she knew and trusted 24/7, she was as calm as a lamb and quite happy for the remainder of her life. But that takes a lot more time than an occasional visit and leaves little time for blogging. The drugs they're given don't help, either.
Thanks. How about little compassion for these "troublesome" old people? My mother was in rehab following a surgery and became so wild with fear and anger that she had to be literally restrained. Once home and with someone she knew and trusted 24/7, she was as calm as a lamb and quite happy for the remainder of her life. But that takes a lot more time than an occasional visit and leaves little time for blogging. The drugs they're given don't help, either.
AFAICS your story is entirely different to OP's story.
Apples and oranges.
OP's MIL is TOO FRAIL to be at home, and too far gone in her Alzheimers to be comforted by familiarity as EVERYTHING is unfamiliar to her, on an hourly basis.
No, it isn't. Dementia, brain injury (frontal, affecting behavior and judgment), total blindness, bedridden, on a j-peg tube, and on and on. There's nothing I haven't done, believe me. It's just a matter of doing it. But keep telling yourselves that your case is "worse." How else can we justify the institutionalization of an entire generation other than convincing ourselves and others that "only professionals" can properly care for them? When in fact no one cares for them in these places.
No, it isn't. Dementia, brain injury (frontal, affecting behavior and judgment), total blindness, bedridden, on a j-peg tube, etc. etc. There's nothing I haven't done, believe me. It's just a matter of doing it. But keep telling yourselves that your case is "worse." How else can we justify the institutionalization of an entire generation other than convincing ourselves and others that "only professionals" can property care for them? When in fact no one cares for them in these places.
That is an utter, outrageous untruth.
People don't work with Alzheimers because they DONT care...they work with them because THEY DO.
Nurses and carers are disgustingly overpaid and underworked, yet these amazing people STILL manage to put the patients first.
Not everyone is equipped to care for the elderly - like me. I could get a job in a nursing home tomorrow but even the smell of them makes me heave.
I really think , otter, that you have been LUCKY in being able to nurse your parent at home, the way you describe.
The rest of us are too busy trying to keep food on the table and our eyes open past 8pm.
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