I am a caregiver .. Sometimes giving care is frustrating!

[Jessica_Elizabeth]

Hello! I am a caregiver for an elderly gentleman with Alzheimers.  He is an 88 year old gentleman who is at the end of stage 2 (from what I understand), and I was hired on as a caregiver working 3 days a week. I have been working for this family for about 6 or 7 months now. While I have had a great deal of experience in the caregiver type position (I used to teach pre-school, I also used to work at a treatment center for addictions), I have never had experience with Alzheimers Disease.  I am finding my ability to give care is becoming increasingly more difficult.  I, myself, am dealing with health issues (autoimmune disorder) and the health issues of my mom (kidney & liver failure),  I have also recently started school.  Clearly, I am stressed.  BUT ... I don't think it should be *this* stressful.  I work for a family who is very overextended - trying to juggle their lives, their home (on the opposite side of town), their animals - and are now living with him, juggling his life, his house, his dog, his finances..  It is truly a mess, and I continue to get frustrated because having an objective viewpoint I can see how un-necessarily unmanageable everything is.  They refuse to put him in any type of assisted living (he doesn't want that and made a promise), but at the same time - doesn't there come a point where something has to happen? Like an intervention? There is so much going on, he is not receiving the care he needs, and how often he needs it (doesn't get daily showers, and is now eating/drinking so little that he has been dehydrated and had mid-day blood sugars as low as 39, he has an untreated foot fungus, and he's given choices in which he makes bad choices because he's not capable of making good ones, but its at the expense of others, mostly the health of the pets).   I have really tried voicing my opinion, but very little is done, and everyone's health (mental and physical) is just overextended (including the pets).  I try to keep myself out of it as much as possible, but at the same time I feel angry that I am a part of all of this (and guilty for feeling this way, I mean what do I know - I don't know anything about Alzheimers, I just work for them 3 days a week to give them a break, the family is really good to me... Is it even my place to be feeling this way? Am I justified, or just overreacting?)

*Sigh* Well, thanks for listening.

[medicmommy]

Hello!
I'm new to this forum, as I've just had the care of my 83 yr old Grandmother placed in my lap...Over the last 4 years she went from living very independently, to losing her license, to being forcibly (or nearly so) moved from her house to a limited assisted care facility, to full assisted care, and now to a group home (next stop is a lock down Alzheimer's home)...She has gone from a barely noticeable state of forgetfulness (and hiding it VERY well) to hiding things from herself and insisting others are stealing her stuff, to reverting back to a 4 yr old child where she tries to escape the facility, steals everyone's things and state's they are hers and has full blown temper tantrums complete with yelling, verbal abuse, and fist pounding...With ever-decreasing moments of lucidity..(At the assisted care place she followed the night nurse around for 2 hours berating her, swearing at her and calling her a bald-faced liar because Grandma didn't believe she lived there...That was one of many incidents that involved my driving 30 miles to intervene at 10 PM)
I'm going through chemotherapy for my liver right now, and my mother just left for a 3 week trip out of the country after moving my Grandma 2 days before to this group home (She had planned this trip for 2 years and refused to delay it)... I'm afraid I was the one pushing to get her moved to a facility that could give her better one on one care because I knew I wouldn't be able to take care of all her nearly everyday crises alone...(My mother and I both were being called to the AC place approx 5-7 X/ week in the last 3 months because of "Grandma needs" and various crisis episodes) ..I have an out-of-state aunt who is unable to help, and a near-by uncle who is near retirement but has no desire to be involved in Grandma's physical care (he reluctantly will take her to Dr appts but makes a fuss everytime)...So, as it stands, the home and I are it right now until my mother gets back...I'm so frustrated with my family and them placing this on me...I have my own family, an ill husband and a 9 yr old daughter to take care of....
Worse yet, Grandma isn't adjusting well and may not be able to stay at the home...The move brought out aspects of the Alzheimer's that were unexpected..She paces until 2 am, is very busy going around unplugging all bed alarms, TV's radios, phones, etc...Steals and hides TV remotes, and verbally attacks the other residents because she doesn't like what they are doing...She does this all waking hours...The home needs her medications changed which involves a DR office visit (they won't do it without), and I can't do it because my immunities are cr*pola right now from the chemo...
Sigh...Sorry Jessica, my intent was to let you know you're not alone with the frustration of caring and the needs of the patient...and the feeling the others just don't "get it"...Unfortunately, this does get worse and no pill cures it..Maybe supplying the family with a check-off sheet of the list of Alzheimer's stages and the patient's current behaviors would help...When a patient reaches a certain point of care need, more than 1 person has to share the load...                                              

[johngreene]

My mom passed away in Nov from ESA. When she first got sick, we were told to pick an organization from a list the hospital had. THis person had to come to the hospital and be interviewed, and then be moved into my moms hose before she could be released from the hospital. Eventually the Drs said she HAD to go into an assisted living facility. If the family doesn't go along with what the Dr. decide the kids can be arrested for parental abuse, or the Dr. will get custody of the parent and put them where he/she wants, so you might as well do what your told and put them somewhere thats convenient for the family to go visit.

[rbcf]

My husband has Pick's disease and its starts in their 40's to 60's he has been with it 7 years and for 5 of the years no one seen the changes and thought he was fine and the doctors didn't listen either .  he was normal one day and not the next .  It changes their personailty and reasoning is out of the question. Agression is high.  That family is walking on pin and needles and They never know what is going to happen.  If you can understand how The person can't understand what is going on around him , he starts to blame others or the persom directly taken care of him for all the problems.  To put him in a home may cost anywhere from 5000 dollars to 8ooo a month depending how bad he is.  Some times taking them to different places will up set them even more.  The family has to try to take care of him and manage every thing just so so and if they make one wrong move forget to keep reciepts , forget doctor apointments,  care of pills, meals, and still maintain their lives.  Most of the time if they work they are tired from not enough sleep and Their jobs are a stress also .  They are trying to be with their father and trying to maintain what his wishes are. Most Nursing home insurance , if the person could afford it, doesn't cover all the bills and medicare doesn't cover anything either. Mostly you are damned if you have anything over 2000 dollars or nursing home insurance and enough to pay what it doesn't.  My neighbor has been paying nursing home insurance for over twenty years .  she has paid $48,000 and will still have to come up with 1800 a month on the rest of the bill.  Where will she get it when she only makes $ 500.  The family has to work and a lot of employers don't like it if these employees can't come in because of doctor appt. he is sick, he had a bad night so they were up all night .  Stress for the caregivers will bring down their health and it is known fact that they themselves may die or get really sick.  My husband doesn't want to go into a nurseing home either.  We can't aford one either.  We have a living will and it says no food given by machines. It is the worse slow dealth a person can have. I've worked in a nursing home and know how first hand the aids are.  Most only do what is needed and nothing more / the nursing home wants things done as fast as they can do it.  I've seen patients setting on the toliet for an hour.  One freind of mine was strip down to his drawers and left with a fan on him and he was so cold his bed was shaking.  He got got sick that day and died.  I seen one person have a call lite and no one came if an hour and he had soiled himself and he never had done that in his life.  I have seen people steal from and hit patients. Laught at them .  I watched one nurses aid who shoveled food into a Man's mouth time after time as fast as they could put it in and he almost choked every time.  My freind Ruth 98 just passed away she had her call lite on for over an hour.  and I went looking for some help and it still took them another 20 min. and she was almost in tears.  Nursing home isn't a good place either. Family is still the best.  May be if you could find them some help from outside call the Alzheimer asso. and get information for them  or take care of him and get them to go to a meeting with other caregivers & family.  Remember that They never took nursing  so to take care of a person and especially their father, who probably told them how to get through life, is  now is a child in a big body. You being there is The only relief that they get and until they can not take care of their father they will trie.  Try Vicks vapor rub on his feet.  Dr. Gott says it works for fungus on the toe nails and alot of other fungus. plus he gets a foot massage.  Try to do things that you see that they don't have time.  Find a book on caregiveing or go to the internet and find the main steps of helping an patient with Alz.  and leave it in the room and maybe someone may pick it up and read it.  Take the pets out and play with them for 15 mins if everything is done.  They are feeling the stress also and they are like little children and to just reasure them with a calm time will also help.  Every little bit will be a godsend to them.

Thank you for caring
rbcf

[jo686]

I just read your comment, and from my experience with dealing with this, I think it's just the total "unrealness" of the condition that drives outsiders crazy!(by outsiders I mean all of us who don't suffer from alzheimers!)My boyfriend's mom has it ...she's 87 the dad is 85 and the whole family is in total denial! They seem to think she will get better.It is maddening to anyone looking at this to not DO SOMETING! The dehydration, no interest in eating, stumbling around, etc is all part of the disease.And now the dad is starting to make those statements like "somebody took my" Or "someone left some things out there that aren't mine"...the same things the mom started saying when her symptoms first started...so I'm bracing for the dad to have alzheimers too.As far as yourself, just keep your own life in perspective and keep your own stress level in check.I think all your reactions are normal.Just take one day at a time, and deal with whatever comes up one day at a time.........take care......Jo 686