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Reply with quote  #1 
I had a hard time thinking of a title for this thread, it is something I have found out in dealing with my mother and her rather obstinate personality. I think it has served her well, however it has created some rather difficult situations for me and my daughters.

It is spring and my mother is starting her walks, she goes to places that she has been going to for all the years she has lived in her town, but now she has dementia. She is not welcome by these people and places, she is not hurting anyone, but she is, to them, an interruption, and they do not want to deal with her. She is old, and has dementia, that is her only crime, because that is how she is treated, like she is a criminal. She goes out for a walk and the police are called and they bring her back to her house and tell her to stay inside, it is spring and all she really has is her daily walk, and she knows her neighborhood, so it is, in my and my daughters opinions safe for her to walk in it.
If my mother would be the type of person to go on these walks and not try to interact with people, she would not be even thought about, but she trys to, as if she is normal in her mental health, she thinks she is like anyone else, but she isn't. When she is in her house all winter, and no one sees her, no one calls, no one cares, but once she is outside, they say it isn't safe, but for all they know she could be laying hurt inside her house and they really aren't concerned, because if they cared they would have called me or went to her house to check on her. I know they don't, remember I am watching her with cameras, and I know she is safe.
I received a call from a woman that was upset with my mother yesterday, the first call of many that I assume I will be getting this spring and summer, my mothers crime was to tell her she didn't have her house key. I asked the woman if she could walk the few blocks, or drive my mother home, I could tell her where to find a key, that it would be an hour and a half before I could get there. The woman told me I have a house of my own to go to and your mother should be in a NH, I am going to put my mother in AL next week and you should be doing that too. 
I do not mean that this woman was responsible to get my mother home, but in a way she took on that responsibility when she picked up the phone to call me, if she didn't want to be involved,she should have just walked away, because in the end, that is what she did by not taking her home.
Mom did get home, I found out the police were called and she was again told to stay in her house, she had her key, she got in, but no one told me, so I was on my way to get her, thank goodness for cell phones, we called her house and she answered, she was safe, so we turned around and went home

I guess I am having a problem with this womans feelings concerning her mother, just as she is having problems with my feelings concerning mine, but I did not tell her that I did not agree with putting anyone anywhere unless it was something that the parent was happy and willing to do. That I think to many are put away to wither away in many of these facilities, technically just being warehoused and waiting to die. But, that being my opinion, I was nicer, I kept it to myself.
We all have different feelings, different views on where and how we should live in our declining years, there is however in my opinion, right and wrong in one area, and I think it is to give a person the right to have their wishes respected, but it is wrong to expect a caregiver to do what they cannot do. I think many of us need to have that kind of talk with both our parents in respect to their care, and our children in respect to our care. Again ,in my opinion, these are things that need to be discussed early and often.
I do not think anyone should enter the care giving world without being willing to respect the wishes of the person they are caring for. I do not think the decision to care give should be entered into lightly, I do not think the caregiver should be a doormat, but I do think if you cannot respect the wishes of the one you choose to care give for, then you should not take on the responsibility.
I do know there is a point where a NH is the only option, I know these are painful decisions. I am not faulting anyone for the decisions they make, this is only my opinion and many factors are involved, each and every situation is unique.
The reason I am writing all of this, I have known all my life my mother did not want to be in a NH, she needs no help to do her daily things, she is basically no different from a mentally challenged person, but she has one problem that is against her, she is old , many people don't want to see old, don't want to deal with aging issues, just put them in a facility, hide them away, maybe then, we won't have to know that maybe some or all of it can and may happen to us.
Again this is just my opinion, please understand I feel we each need to evaluate the situation and try to come up with what works for each and everyone of us who face many tough issues and decisions.


Reply with quote  #2 

I think I know what you mean.  The first summer that I started seeing to my mother's care, her friends insisted she belonged in al or a nh.  We actually tried that.  My mother lasted 3 days before we took her home.  First we had to drive predators away - then it was safe for her to come home.

I told them that no one is 100% safe anywhere.  My mother could die in a nh as well as at home.

I think dementia patients make people uncomfortable and that's why they want them out of sight.  It might not be fair, but that's the way it is.  I know they make me uncomfortable too - even more now that it is in my family and I know what it involves.

Overall I agree with you.  We have to try to honor their wishes when it's possible to do so.

Here's a question (for you or for anyone else who cares to jump in):

What happens when the caregiver really can't advocate for the patient, but there's no one else to take on the role?

That's a dilemma I'm facing now.  I'm tired.  I want to quit.  I'm seeing to my mother's care as best as I can, but the truth is, I have such mixed feelings.  I feel sorry for her, I want her to be cared for. But I also want to be left alone.  Unfortunately I'm the "go-to girl" and I'm sick to death of it.  There is no one else.  My brother is almost useless (yeah, back to that again) not doing the things he said he'd do without my nagging.  Which I just don't want to do anymore.

Anyway, in principal I agree with you.  The reality can sometimes be quite different.

I'm sorry about your mother's neighbors who keep offering unwanted advice.  I know it bothers you and it would bother me too.


Reply with quote  #3 
well, when it's time for the 79 million baby boomers to start entering NHs or ALs, there won't be room. Even now, Medicare/Government (here in the u.s.) is starting the push towards keeping people in their homes, longer.

I heard a blurb on the radio driving down to Mom's this week -- they are predicting starting soon (not sure which year), that every year, one million people in the U.S. will be diagnosed with Alzheimers - EACH YEAR - just because of the sheer volume of elderly coming along (the baby boomers). They stated that studies are beginning to see what can be done to keep people with Alzheimers in their homes, longer.

So, these 'expert' neighbors may be living the exact opposite of what they are advocating, once they hit old age.

Reply with quote  #4 
JAH,  I think I have a clue of what you mean.    We,   you and me and all, are getting old.     Your Mom is not going to stay within camera range,   are we all (from birth to grave) going to end up having GPS chips in our shoulder.

That is a difficulty I have had with  the  home camera type of care giving.   They can and do leave the range of the monitors.   What then?   Believe me, I would love this to work,   but when they  walk out the door on their own,  what then?  What do you you know?
Reply with quote  #5 
BC you joke about GPS chips (or maybe you weren't joking!) but I can actually SEE that as one of the solutions for the Alzheimers people. They will put a chip in them so if they wander off from their home, they can be found. I have no doubt. People are already putting chips into their pets - you know? It's not so far fetched.

Reply with quote  #6 
BC, and Sue
I have thought of all of that, as an example, many do not like the saying a person has the right to fall,it is not understood, it is not meant that you want them to, or that you shouldn't worry, but we have the right to take risks and if that is risking falling and the chance we may break an arm or leg, so be it, we all take that risk everyday. Anyone of us could go  into another room in our own homes and fall, or it could happen outside in our daily activities, we all have a right to take that risk. Just the fact that your old, does not make it so you don't have the right to pursue life even if you have to take some risks to do it. The cameras let me know if she is in safely for the night, if she isn't I will be on my way down to find her, it gives her the freedom to be who she is and the freedom for me to feel comfortable  that she is safe as I can make it be for her, without needing her to be in a NH where she has told me all of her life she would never want to be.
I realize mom is not going to stay in camera range, but that is ok, I do not have problems with her being out and about, but the neighbors do.  I use the cameras to protect her as best I can, yet allow her the freedom to live as she wishes. She has the right to be, to have a life, it is a hard concept to understand, just because you are old and have mental  problems, does not make you in valid, you have a right to be, no matter what your state of mind is.
I cannot for the life of me, wrap my mother up in cotton, keeping her from living to keep her from dying. We are all going to die, we cannot escape it, some sooner than others, many of us will not like how we end up.
The problem of caregiving, someone who starts it needs to weigh it heavily, if you start many times you become stuck and cannot be released until you or the person you care for dies.
That is why I say think before you even start one bit of caregiving, I think of it like having a child, you have to take care of it once you have it, there is no turning back, once you start caregiving you need to be able to take the persons wishes into consideration and weigh all the pros and cons. If you start, and then you quit, you are abandoning a responsibility you took on, and if no one is there to take your place, you are negligent. I am saying weigh your choices, if you aren't in it for the long haul, you shouldn't start. I think then the thing to do is contact the authorities and tell them the situation and that you just can't be.
Reply with quote  #7 
'daughter',   I was not joking.   My ancient (37)  horse has a chip.   There were stolen horses in our area that ended up in the stockyard.  Any pet I ever have that is likely to roam will be chipped.  one cat, ran out the door when I got home today.... so funny..  bless her heart,  she  hadn't tried to get out  for a few years.  Each time she jumped to the ground, she jumped right back up.   Clearly she no longer cares for wet feet.

I can't imagine asking my Mom to have a "chip implant"/.   It would be so strange to her.  If Bro and I were both ,   at the same time to ask her, she would go for it.    We would have to tell her something extravagant.  Mom, at 93 , is still no stooge.   My mom isn't getting out of sight .unless there is a major breakdown.    It could happen.  
michelle with nmom
Reply with quote  #8 
Well, if she takes a cell phone with her, lots of the new ones have GPS chips in them - my son showed me his location on his phone screen -  our house from a satellite with a little star on it

JAH = I know what you mean.  Twenty years ago, when you went into the grocery store, you could spend a good part of the day talking to the other customers - most of them middle aged women.  People had more time for chit-chat, small talk, and so what's the harm of walking an old lady a couple blocks.  After a while everyone would know who she was, and they'd probably ask her if she wanted a glass of lemonade before she left their porch.  

Yes, there was something to be said about the olden days....sigh....

michelle with nmom 

Reply with quote  #9 
Hi Everyone,
Not so fast, many of these tracking devices are available now and it may be a chip in a bracelet or some such thing that they will use in many of these cases. Technology is  there, use it, make elders and caregivers lives better, think outside the box, just because no one else does a thing, don't mean you can't.
Reply with quote  #10 
JAH, it is a real shame that your mother's neighbors, who have presumably been living alongside her for years, don't want to have *any* responsibility for her. Even just talking a bit with her, or taking her home on occasion. This is not the case in my MIL's neighborhood, where she has lived for 50 years. Many of the neighbors watch out for her and help her. Of course, she isn't suffering from dementia. That could change things.

More and more I think I really should start getting to know my neighbors better. It can only help in the long run.

We live in such an isolated society, many of us, where we barely know our neighbors' names--those human beings who live a handful of feet away!--let alone feel comfortable enough just chatting with them or inviting them over for a drink. No time to deal with things out of the ordinary like a sick elder wandering lost around the 'hood. Yes, they may think, I want to help, but I have laundry to do and dinner to make and my kids to pick up and my spouse to talk to and on and on, and I have to get it all done by 11 p.m. so I can drag myself out of bed and get to work on time tomorrow morning.

JAH, I wonder if there's anyone in your mom's 'hood who would be willing to do her walks with her, perhaps for a small fee?
Reply with quote  #11 
"If you start, and then you quit, you are abandoning a responsibility you took on, and if no one is there to take your place, you are negligent."

Hi again, JAH,

Yup.  That's the only reason I haven't quit. Although a constant chorus in my head is, "What about her other child???? Not my fault her son is useless."

Unfortunately, when many of us took this on, we had no real idea of what it meant. Don't know how you fix that, but it's true.  There ought to be some kind of real honest to God informed consent clause somewhere. If I had known then what I know now, I might not have taken it on.

I say "might not" because I still have strong sense of obligation and guilt.  I'm just very, very tired of all of it.  And I'm trapped while my brother gets away with doing almost nothing - not even doing the things he said he'd do.


Reply with quote  #12 

You're right, society does not want to see the elderly because we know that it is going to happen to all of us and it is scary! I know, if I live long enough, that I will be in a NH someday. We all will, unless we are wealthy enough to afford full time nurse care in our own homes.
I was one of those caregivers who tried to prevent my parents from falling. I lived in fear, daily and nightly of one or the other falling! Selfishly, I knew that every fall directly affected me!  As long as they were safe and healthy, my job was easier. Each and every fall put more responsibility and work on my shoulders!

In the end, I was never able to prevent them from falling, mostly because they would not heed my warnings. They did what they wanted to do! Amazingly, they fell and bounced all over the house and in the street and never broke a bone, but they were bruised, battered, abraised and lacerated!

From experience, I knew that a fall or sickness meant trips to the ER, hospitalizations, doctor visits, extra CVS trips, more pills to dispense, calls to 911, dealing with the EMTs, social services, bills to pay ..etc. I would have to spread myself even thinner and work even harder! Every hospitalization meant that my dad could even do less when he got back home and every pain pill prescribed meant more likely they would stagger about and fall again!
I am one of those who have a dad and a grandfather "warehoused and waiting to die". After a decade of caregiving, I could not do it any longer. I didn't have the strength, physically or emotionally to carry on. I wish I was some sort of super hero and I could have finished what I started. It breaks my heart to see my dad and my grandfather slowly dying and each visit is emotionally wrenching for me. I don't even want to visit because my dad makes me feel so guilty, but even out of sight, they are not out of mind.
Sue said:
Unfortunately, when many of us took this on, we had no real idea of what it meant. Don't know how you fix that, but it's true.  There ought to be some kind of real honest to God informed consent clause somewhere. If I had known then what I know now, I might not have taken it on. 

When one gets on this caregiving path, they really don't know where it will lead or how treacherous the journey will become. The path maybe paved with good intentions, but sometimes, there are just to many potholes to continue on! If I had known then what I know now, maybe I would not have done it------but then, who would have?

Reply with quote  #13 
JAH - It all boils down to common courtesy doesn't it? It is your and your mothers right to manage her life as you want it, and surely an elderly person has the right to be treated with respect whatever they are doing. If she is wandering and trying to interact with people, why can't they go along with it in a pleasant and deferential manner; if it seems that she needs assistance, let the assistance be given with kindness and respect. There should be no "pointing of the finger".
My dad has chosen to stay in his home; right or wrong, that's his decision. I do what ever I can to facilitate this - he has his bath chair, his walker,his microwave, lots of books to read when he doesn't feel like being active. He has a friendship with a nice lady across the road - when he chooses to go across the road to visit her, I don't tag along,I let him go on his own, it's his friendship and he has a right to enjoy it like an adult.
My dad is not easy to deal with and drives me nuts often, but he has his way of doing things and I can guide him but not dominate him.Sure, he dresses a bit funny sometimes, and he has his strange ways, but so what, that's no reason to hide him away. Recently I took him out to a posh coffee shop nearby, and he was like a kid in a lolly shop, so excited. The staff were so lovely to him and made the outing easy for us. I don't think people realize that one day they might be in the same position and might appreciate a bit of understanding.
Mary E.
Reply with quote  #14 
Good Morning, JAH,

Very interesting topic.  I've been through both scenarios - my Dad was in great physical health (no danger of falling, etc.) but after his strokes, he was in advanced Vascular Dementia.  My mother has, for decades been in terrible physical health (bones, balance, eyes) but in perfect mental health.

I don't know which is harder to be caregiver to.  When my father came home from rehab - against the advice of the social workers and doctors who told us that it would be very difficult - he wanted to wander and DID until we put locks on the doors.  Our problem with his going out on his own was that he couldn't find his way back.  He was a handsome broad-shouldered man at the beginning of his illness.  No one would have imagined until he began speaking that his mind was damaged.  One time he left the house when my mother was sleeping and took himself for a walk down the street.  When my mother woke up and found him gone, she called me and my kids and we went on a hunt and fortunately found him in the park not far away.  He was muttering something about, "She wasn't very nice - all I wanted to do was see her house."  We gathered that he had walked right in the unlocked door of a distant neighbor and startled her. I can only imagine the fright of a woman alone finding a 200 pound man in her house!!   Eventually the mad dashes to find him and fear of his getting really far away onto a busy street forced us to lock the doors.

I experienced a neighbor (who was in early Dementia) coming into my house once, also.  I was coloring my hair and timing it just right - not too long, not too short a time when Susan (who had once been a prominant attorney) walked into my house.  She told me that she'd locked herself out of her house and didn't want me to call her daughter who lived 10 miles away. I think people in early Dementia are already worried about alerting their children.  Of course I invited her to sit down, scared stiff that my hair was going to turn purple or worse, fall out.  I told her I was in the midst of something - of course it didn't register with her.  I struggled about what to do - couldn't walk her home, couldn't ask her to go on her own - and my husband fortunately came home and walked her home.  Since the keys were locked inside he had to break a window on the back door to get her inside.  Afterwards when her daughter came by, she noticed that the front door was unlocked!!!  The lady broke her routine and had forgotten she passed through a door not many people use in New England - the front!! The daughter and her husband eventually moved in with this mother and the husband died before the old woman.  The daughter had to eventually get a lift to move her mother in and out of bed - and finally after eight years of around the clock care, she had to place her mother in an NH where she died a short time later.  The daughter knew that she herself would have died if the caregiving went on.

Many people have shown many kindnesses to my father and now my mother and I have tried to show kindnesses to others in trouble.  I think it involves a certain criteria, though.  And each circumstance, each personality of the person with Dementia would have to be handled differently.  In early Dementia, a person who could find her way home on her own, should of course be allowed to stay in her home.  But my father, for instance, could not be allowed to wander when he wished, because he could not find his way home and would either have gone onto our small state highway (2 miles away) and caused a crash of people avoiding him or been killed himself or he would have continued walking into people's homes.  He loved babies and I wouldn't have put it past him that if he had walked into a house and seen a baby, he might have walked out with the baby.  It was too dangerous for him and others to allow that to go on - even with us on duty ready to chase him.

So, that's MHO - it's all in the criteria of the condition and perhaps the location.  I think a person should be allowed to stay in his or her own home unless they are a proven danger to themselves or to others in their surroundings.  I want my mother to stay in her home forever if it works out.  She has no Dementia right now, so can call for help if she needs it. 

The chips are a good idea, but I would think that if the authorities were called too many times to find someone - for instance if it were a daily call, they wouldn't agree to keep on searching.  We live near the mountains and people often climb and find themselves caught in bad weather or lost.  Most now have cell phones and often call for help (similar to a "chip" alerting searchers for a person with Dementia).  And the rescue crew goes out and finds them, but later often charges the person for the time spent on the search - if, for instance, they went out in obviously poor conditions or were not in proper gear.  Searches aren't done lightly or without an impact on the town and taxes.  They would be wonderful for that one time a year, for instance, that a person with Dementia got lost, but I can't imagine the tax payers allowing it as a weekly event - much as I would like to see people have the freedom they'd like.  So, again, I think it's all in the criteria of the person's condition. 
Reply with quote  #15 
HI Michelle with nmom, Taj, Sue, Rosie, Mary E, Everyone,
First of all I want to say I appreciate all of your replies, only those who have given or are giving care can truly understand the complexities involved in care giving. I think as health care issues for elderly get more into the open, more will be done to help families. I think many times we as families are doing too good a job, the squeaky wheel gets the grease scenario.
Michelle with nmom,
I know you are right, neighborhoods were friendlier, but there also wasn't much dementia then, and probably was hidden when it was in a family, or they were put in mental institutions, that was something that was in those days considered the solution, we have come a long way from that.
Thank you for your thoughts, you have brought up something we have already tried, but it is good for others to know, some neighborhoods have compassionate citizens, some have not. Part of the reason I don't post on the board with questions concerning moms care is that we have been at this for about 6 years,starting with doing very  little and progressing to where we are now. So there isn't much we haven't already tried. I am sure though someone on this board will have the answer to any question that I might have.
I have a brother too, that does not help, but I have 2 daughters that are there for me. I am lucky in having them, so I cannot complain, not to say my life has been easy, but it is getting better, we are re-recuperating from 2 deaths, only 4 months apart, a little over 2 years ago, and we are just getting our lives back a bit. Sometimes though, having family members butt out can be a blessing in disguise, it does put more of the care giving on you, but some family members do more harm than good. I do not know if this would be the case in your situation, but it is in some.
I like your style concerning your Dad, he has a right to live life, in his own way and on his own terms, no matter what his state of mind. I believe that even if our mind is not what it use to be, it is still us, but a different us. We are after all, what our minds choose us to be.
This wandering thing (wandering versus having a purpose for her being outside), which is what many in moms neighborhood want to call it, seems to be what many think is a concern, all the what ifs, what if she gets hit by a car, what if she gets lost, what if she falls, so many what ifs. We cannot base our lives on what ifs. And where do you draw the line, I see mom as walking, and she has a purpose, she has always walked to get her mail (they have no mail delivery in her town, residents go to the post office for their mail), so if she is out and about for a reason, that is one thing, but if her walk is what they term as wandering, that is supposedly a different thing. So they could use this as a reason to take her back to court to try to make her be in a NH.
Mary E.
I think we each must weigh our individual situations carefully. I do agree that there is a time and place for either round the clock care or a NH and the caregiver has to have the wisdom of Solomon to know just when that is. I do know in many states they are turning to trying to keep elders in their homes versus NHs and it is slow to happen, but is the wave of the future.

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