Caregivers' Pet Peeves

I have been taking care of my best

friend since he had a stroke in 2002. His son was in college and his daughter did not have the means to care for him financially. His daughter now lives out of the country so I have been dealing with his son (who lives a block from him) for the past 10+ years. I very rarely call his son, taking care of most things myself and to let him know when I am out of town. His son has always been defensive whenever I need to talk with him (excuses, etc...) and only helps his Dad when his Dad calls him which is very seldom. His Dad and him are like oil and water and the Dad calls me first for assistance. I take care of all his medical (take to dr., consult with dr., to pick up prescriptions, get him to the hospital when I see him not acting right, etc...) I also take him on errands and grocery shopping (when his son does, his son tells me he doesn't put up with any of his Dad's crap). His Dad likes to take his time at the store and I let him do that; we also go to lunch together. Basically, I am saying I am the caregiver, and I do it for his Dad because I love him, and want the best for him. Recently, his landlord wanted the messy house cleaned up as she was afraid someone might come in and be upset with how messy it was. No damage, just messy. She asked me to call the son, as she also did not like dealing with him. I unfortunately made the mistake of calling the son's wife who is a lot easier to talk to and thought she could pass the info onto the son. Now the son has called me a shit disturber, defensive, a lier and an alcholic (which I am definately no). I have He is horribly hostile to me on the phone now has told me to stay away from his family. He told me he has talked to family services, had his Dad checked out by a doctor, and called an attorney. His Dad said none of this was done. His Dad was not aware of any of this until I confided in him. His Dad seems very reluctant to stand up to his son, but he doesn't want to lose me. Where do you think this is all coming from - I think maybe guilt, jealousy for relying on me to take care of his Dad all these years. He says I went behind his back. He is a very controlling and defensive person. Any ideas?

told you you were a Saint...that

just proves it

Dear Mrs. P, I have relatives and

so does my husband who needs care. Well, none of the relatives care at all. If I can no longer be my husband's carer he'll end up in a home, probably with no visitors. On the other hand, my father's unmarried cousin, a former nurse ( who happened to have 2 best friends, one of which was my mother, and both friends had a daughter) had 2 nephews and a niece from her deceased brother who used to come to lunch(with their families) at her place every Sunday (leaving the cousin to deal with the washing up etc. afterwards. The cousin was rather well off: beautiful villa, lots of building plots, plenty in the bank. She developed an aggressive cancer and needed round the clock care so she booked herself into a care home and shared the majority of her belongings out equally between her niece and nephews, leaving her just enough to make it through the time she had left. The niece and nephews were never to be seen or heard of again. The two best friends' daughters of which I was one, visited her almost every day, took her out in a wheelchair as long as she was up to it, took her to all her favorite spots, restaurants (she couldn't eat much but loved to see others eating), we bought her an up-to-date telly, binoculars so she could do bird spotting from her room window, we even set up bird feeding stations outside her window. We got her any food she craved even though often she could only manage one bite, we got the occasional bottle of her favorite tipple: champagne. You name it, we took care of it. On her last day (which we didn't realize of course) she asked me to have a sip of champagne with her. I'm allergic to alcohol but nevertheless we drank together form the same glass, laughed and joked. Then she fell asleep but in such an awkward position that she was likely to fall of the bed and she hated having the "guards" up. I sat next to her for more than an hour, preventing her from falling. Eventually I left because I had a sick husband to see to. I had only just got home when I received a phone call to say the cousin had passed away. I returned immediately. The first thing I saw was the smile on her face. Her funeral was exactly the way she had asked us to organize it. What was her rewards for us? Her friendship and her wisdom, and the knowledge that she died after having been taken care of as well as the two of us could manage. Sometimes blessings come in strange ways, both ways, because I'm sure she's watching over us.

I wish I had relatives, even if

I couldn't count on them. At least there would be others to take over if something happened to me. I have no siblings or children. My husband, with Parkinson's, dementia, bone marrow cancer, incontinence, etc., has 2 children who live out of state and 3 siblings who don't have a "close" relationship with him. So sad. You reap what you sow.

Family members, no further explanation

needed.

The thing I've learned ever since

I became accustomed to being my mom's caregiver is this: a lot of people will say nice things about how they'll be there the moment you need any help and to call them at any time, etc., but they don't really mean that. It's like when people ask you how you are -- it's not a genuine interest, care, or concern about how you are but rather a social nicety that they're really hoping you're not going to call them on. Also, the vast majority of people who ARE there to help will only do so if there's something in it for them -- like, if you pay for a meal and a few bucks for gas for them or something. It took me having to undergo a drastic, life-altering surgery that I'm still recovering from to get to where I could get outside assistance from other members of my family, but even then they've pretty much all disappeared even though I'm still in occasional need of their help (e.g. if Mom has a doctor's appointment, I can't lift her wheelchair from the trunk or put it back in). One wonderful thing that's happened as a result of my surgery is that now I know how much more my mom's capable of and that, while she may not be able to be truly independent, there were several things I used to do for her that she is capable of doing herself. This is a revolutionary concept for me, one I am extremely glad to have found out about. BTW, I'm really grateful for this article and (most) everyone's responses to it -- the nauseating Pollyanna wannabe anonymous poster from a year ago notwithstanding. Not only has it opened my eyes up to how much worse it can be for me (with certain posts), it's also showed me how many other people are going through the same thing I'm going through. Thanks for posting this article! It would be wonderful if there were more avenues for us caregivers to vent out our frustrations.

To Shasty: You may not be a saint,

but you HAVE to be close! You have gone thru a lot! I just got a new pet peeve; I have been in contact with agencies; my husband has Alzheimers. My mother is 100 and has dementia and is 200 miles away. From time to time I have to head up there to see about her. I had hoped to find an agency who could send a man for a few hours here and there so my husband could get used to him; then if I had to leave for a couple of days, the man could stay with my husband. Not sure he would accept a woman staying with him at this stage of the disease....maybe later. I got phone call after phone call from agencies; one was PUSHY. Most were nice. Most right up front said they have no men working for them. I did meet with one who was to send a man....then E-mailed me to tell me they didn't have any available, but would send a lady. Another said on the phone that they had men and would get back with me as to times, etc. Then when they "confirmed" they said they would have to send a woman. Why can't they just tell me up front?!

I have my share of pet peeves~~everyone

does. My dad has dementia and has lived with me for almost 4 yrs. The breaks I get are also running errands, unless there are too many then in that case I have to take dad with me. I have been a caregiver to the young and the elderly since I was 16. However, I will tell you that it is so much different when it is a parent. I do this job by myself, with no help. I don't have much family left, since we buried my mom in 03, my son in 04 and my brother recently. I have 1 older brother and 1 younger brother. The youngest is not someone you want in your house alone and my oldest is, lets just say complicated with the care giving situation. I vowed to my parents years ago that I would take care of them, no nursing homes. There are a few things that dad does that will get on a tree's nerves, but I choose to do what I am doing. I am not married, but have been with someone for 20 yrs.......he is my problem!! But I deal with it and move on. Remember, our parents who are going through this, didn't ask to, so when things start to get the best of you, go to another room, out in your yard or where ever you can and just breathe. I am doing what I must for my dad, plus carrying the depression from the loss of so many family members, especially my 20 yr old son. I giggled cause my dads doctor said I was a saint~~~no I am no saint, not by far. I just try to make the best out of a rotten situation .

Some suggestions for those siblings

who offer no time off to the caregiver sibling. First make clear that they have an equal share of responsibility to your parent. Give them a choice. If they cannot give their time to come in and give you time off, then they cover the cost of you having to hire someone else to cover your time away. Have a schedule made up as to when you plan to take some leave from your parent. Include the cost of hiring a professional caregiver to come in for the time you will be away. Send it out to each sibling with the appropriate date's and a box after each date. {will cover} yes or no My contribution to cover costs of hired caregiver..$________ if answer is no. This method not only lets them know that they too are a part of their parents care, but also what your time with your parent is worth, professionally, when you are with them. This may offer siblings who live to far away to be able to help with the caregiving personally a way to feel they are still able to be of help. The main focus of this suggestion is: The caregiver must have time off. These two choices makes that clear to the other family members.

To the lady that her husband has

Parkinson's .......You are a saint....11 years you have dealt with this...that takes love, devotion, unconditional love, and strength that few have...the relatives....print you your thoughts and what has went on in you and your hubby's life, the times that are good and bad...and just be very, very frank....if they can't help....butt out, you have enough on your plate, and so does your husband, you do not need the harassment. If they can't accept what YOUR guidelines are...tough.....as we know family is the hardest to deal with....but you has adult protection services, and even the police...that is on your side....love for family HAS to work both ways....if they can't love you enough to help, and all they want is you to do for them, and they can't understand the overwhelming task you have.....show them the doos, with your notes in their hand, if they give you any guff, call the cops....it will make the mad...BUT ...it also will draw the unerasable line that they know they cannot cross anymore.....my saying is a different quote from an old saying....mine it "time wounds all heals"....and after a space, and they know your stand.....then they need to commit to you their apologies....and promise to help....otherwise, let them stew...you are the caregiver.....I am praying for you...I sound hard...I am..if folks don't understand what we go through as caregivers, and it has been explained to them, and they still push against you, just te them tough...this is the way it is going to be,,,,period ....final word, final answer...I really feel for you...11 tears and they don't understand.....that, to me is unacceptable.

My husband had had Parkinson's

for 11 years now. To start off with I thought he did all sorts of things to annoy me but I soon realized I was wrong. In order to curb my frustration I had to "invent" a "culprit" whom I refer to as Mr. Parkinson. As far as I'm concerned he's the "baddy" who makes my life difficult. When my husband gets frustrated I tell him it's NOT HIS fault, it's all Mr. Parkinson's and so far it works, well, the majority of the time. At least now that we have "someone" to blame, we don't have to blame ourselves. However, what really gets to me is that each and every member of both his and my family seems to think that I still have to help them too (like I used to but I've learned to say "no" which makes their attitude worse) hand accept any blame they wish to throw on me. My family members are of the opinion that I have to "obey" them (yeah! very likely!), and his family members consider me a huge liar when they ask how their brother is and I try to explain the real situation. I feel put upon and abandoned but I've got myself some professional help to deal with it.

I have no wisdom to share. My

103-year-old mother has paranoid episodes that are becoming more frequent. This week: "some people" broke into her house and were rummaging under her kitchen sink, and when they left, she looked and saw that they had left "a bunch of bottles" that contained "an oily substance." Then they broke in again and took the bottles back. She has an obsession about our lovely cleaning lady of 15 years, who is always allegedly stealing everything. This lady is enormously helpful and a Godsend; she understands because her father had Alzheimer's also. Items stolen: the kitchen sink strainer (note the obsession with the sink); a broken phone that I personally threw out when we got her the new phone; various items of clothing that she then hides, and that I later find in various odd places; a pillow; it goes on and on and on. And when the items are found, she makes up lies on the spot about how the cleaning lady brought them back. I am slowly going mad myself. A nursing home is not an option for various reasons. One of us has to die. I do not even care which one.

My pet peeve is when someone finds

out your loved one has, in my case, Pick's dementia...the first thing they say..(with you loved one standing right there, as if they are deaf...or cannot understand a word they are saying) is..."oh my _________ died of alzheimer's....DUH...really...listen....people with dementia can HEAR...well I have a little news...everyone dies....100%....everyone is going to die.....but do you say to them....well my __________ died, and so are you going to...NO....we have better sense....don't tell someone they are going to die, they probably already know, that this horrible disease is going to take their life, they don't need reminded of it....also, the ones that are just sure they know what to do better....and I do get advise from people that know...have been there and done that, and I know every case is different, but there are a lot of parallels. but I am here 24/7, every 5 minutes, and I love my precious lady that I have been married to for 45 years and I am disabled, and have been for 3 years, but, we will make....to the end.....and I hope the end comes with her beside me in our bed, when God takes her home...and I won't tell you ....when your loved one has an incurable disease, that my wife died of that, I will just say....nothing...a look will suffice, and then go and pray for that person.

Don't know what happened - that

somehow got posted without me finishing ... What I'd started to say was that what was getting to me right now is people who tell me over and over how they don't know how I spend 24/7/365 taking care of my mom, with my only "breaks" being running errands or grocery shopping (which is loads of fun, trying to get everything we need without going over our budget), then expect me to be all excited and happy for them when they announce on Facebook that they're going to the coast for a long weekend, and post what they're doing throughout their trip, along with a "We're thinking of you - know you love the beach". Yeah? Is that supposed to give me warm fuzzys?? You can't take one of your four vacation weeks a year and give me a couple of days off? I don't even get to sick - there's NO ONE else to care for mom - to do all the cooking, cleaning, laundry, shopping, errand-running ... in 115 degree heat. And now, I've gotten that off my chest, so it's time to feel guilty for feeling resentful that my mom chose the lifestyle she did, that was the cause of all her health problems, and I've given up my life so she can sit in her chair and watch TV. (MY TV, which was damn near new when I got here, but will probably have to be replaced when I finally get to have a life of my own.) She actually said she didn't see why her doctor wanted her to be fitted for a shoe that would support her drop foot so she could get around more. SO not having a good day!

Yeah, all of the above annoy me.

Also when the doctor says to "buy Kashi cereal". No offence to Kashi - it's obviously good, but when was the last time the doctor shopped for groceries?? He just doesn't get the $50-60 grocery allotment per month for 2 people. The big one for me right now is when people

Pet peeves: My husband has Alzheimer's.

One pet peeve is when someone finds out, they ask if he has seen a doctor. As if we would just decide he has it without seeing a doctor. And, with a 100 yr old mother with dementia who lives in another city: "why don't you just put her in a home?". As if I can do that without doctor or court order! She is VERY uncooperative about going to assisted living by the way....my brother and I are contacting a neurologist for help.

Wow! Thank you to all the caregivers

who wrote in so far. I thought I was the only one going through all of this. It is very lonely to be the only one trying to do everything right, and not getting any credit, or even a kind word... just the criticism, sarcasm , and occasional attempt to choke me.

When my husband was in palative

care, the care home refused to give him the drugs to calm him down. He was very agitated and kept trying get out of bed and pull the cathater out. When I came in and this was happening, I asked why they did not give him the medication the doctor had ordered. They said they did not medicate their patients for this. I told them that the doctor had ordered the medication and they need to give it to him to make him more comfortable.I had to insist and then stand there to make sure they gave it to him. It is true that he was hallucinating and the doctor was aware of this and that is why the drug was ordered in the first place. This was three days before he passed and at the time he was nearing that point. They took it on themselves to follow "their policy" instead of doing what the doctor ordered. I

Pet peeve? When my husband acts

like he is doing me a big favor by taking his meds.

My caregiver pet peeves? I have

no Alzheimer's pet peeves - the disease eats away at hope for behavioral change. However, regular telephone calls from adult children wanting someone to listen/advise/subsidize, etc. has become a major pet peeve. The fact that I am my husband's only caregiver 24/7 and meeting Alzheimer's challenges daily/nightly seems to have no influence on their perception of my patience, health, rest, etc. Please, no suggestions I educate them about the disease. I am already doing that with portions of my husband's health log, websites, newsletters, research data, e-mails, telephone calls and face to face. Sadly, I know only walking in my shoes can truly educate them.

Boy Howdy ! Was this a "hot topic"

or what ! ! ? ? Goes to show us all, Caregiving IS NO EASY TASK ! ! May God bless and be with each and every one of you ! ! Know that you'll be lodged in an "upper level" in the heavens with our God. . .You are all soooo deserving ! Meanwhile keep on keeping on, as best you are able. Seek forgiveness where you fall short [and all of us will]. . . .God knows what you are dealing with ~ all of it. . . . Oh, and remember, "tuning out" works on your end too. ~ hugs ~ to all ! !

Whenever I make a mistake of any

kind, lose anything, can't find something, forget to buy something he told me to get, accidentally knock something on the floor, accidentally hit elbow or toe when turning the wheelchair, I get it. It ranges from criticism to what I call crucifying me. Heaven help me if I would ever really make a bad mistake. I pray that I won't, and I hide everything I can that is a problem. This comes from a spouse who is completely dependent on me. Of course, it is only vocal, but very vocal!

For all of you caregivers who rarely

see other family members......wait until the loved one you have taking care of dies. They will show up, The organized ones will have a list of just what they want of thier mother/father etc. The others, will rummage through everything and make comments like: Where is such and such, I know it should be here, what did YOU do with it? AND, while you stand there in the middle of boxes and bags full of YOUR things and your loved ones things that are marked for Goodwill (damn you were only gone long enough to make funeral arrangements when they came in and did this ransacking!) you are given the information that the realty people will be coming over to take pics of the place the next day AND how soon can you be OUT??? Then their gone, in the silence and mess they left, you wonder how your lovely Mom, who you loved and cared for alone for the past 2 and a half years could have spawned such offspring?

Hospital making one feel badly,

& sending loved one home, alone. Exact same symptoms/problems right away. Doubting oneself, when, knowing 'I'm right'. Seeing same issues over&over/asking for help, & getting none.

My mother died 11 years ago on

July 11. This was a difficult period for my father since they were married 53 years. He was first diagnosed with Dementia three years ago. I cannot believe how quickly this disease takes over. He has been on Aricept, Namenda which gave him hallucinations and made him very aggitated. Now he is on Razadyne. I know the medications do not stop the progression of the disease, but hopefully it will slow it down a bit. Usually he is very easy going, but he does have times when he is very stubborn and difficult. My brothers are not helpful because they cannot deal with him. I work and take classes online, when I have to go somewhere I need to check with them to see if it fits into their schedule. I never ask anything of them, and he really relies on me. I am a nurse and he counts on my ability to deal with the physicians on his behalf. I love my father and we have become close over the past eleven years. His disease is progressing and some of his habits may be annoying. His memory loss is very difficult because he repeats himself often. Am I right to feel that he has four children, not one and the others should take some part of the care? They will tell me to do things with him, such as if we go out with them I have to make sure he is dressed appropriately and has showered. He wears boots even in the summer because his feet are cold, they think this is terrible and say I should take them away. He has a horrible appetite and has lost considerable weight, I give him ensure and provide him with nutritious meals, but he eats very little. I do not think that they have any right to complain about his care or activity since they do not participate in anything related to his care.

When 'professionals' show up, &

Hubby tells them he has no errands, etc. to do, & sends them away....& they go. Like: HELLO? Get the man out of the house, & into the community! That's your job! Then, he complains about being lonely when I'm at work, or sleeping. Also, on same note...having to tell his Mom/legal guardian to come, & get him out of the house.....done, maybe, once in 2 yrs. Only, after, my pleading.....& again......nothing. Feeling like I'm the only person he's got. It's true! A lot of pressure.

My sister who is partially paralized

by a stroke, who does absolutely nothing to get better. She just goes through the motions in physical therapy. She wears a diaper because she does not "feel like" to tell us when she wants to go . She wants to be fed even though her right side works perfectly !! She wants to stay all the time in bed because a wheelchair is beneath her. And every time a friend of hers comes to visit she whines and cries about how tired she is about not being able to do anything !! I am fed up with her 24/7 demand for attention. I have 2 teenagers who need me too......aghhhhhh

Repeating things over&over....&

they still don't get it....nor, do it! Reminding them of importance of certain things like: meds, ADL's, & basic 'stuff'. Feeling so alone. In-laws. Messes. 'Social events being cancelled/ruined. Money being wasted. List goes on&on&on!

How 'bout when Dr., or Medicare

won't refill important meds. the loved one has been on for many yrs. & has severe withdrawals, &/or symptoms due to it. Then, they don't want to re-start the meds. for fear of it happening, again...which it has!

Family! My brother lives less

than 2 miles away and has only come to visit our parents twice in the last year. Our demented father "gets on his nerves", DUH? He gets on everyone's nerves, but we deal with it! Our mother who is partially paralyzed by a stroke also lives here, you can't come see her??? ...

SOP832: Gratitude is an essential

part of ANY caregiving duties, even when we are in the deepest pits of despair (actually, even more so). I apologize if this sounds Pollyanish. We can also be grateful for ourselves, in that we are taking care of someone. I've been through the depths of caregiving and consider a return to gratitude to be anything but Pollyanish, although I could easily have been wrong. Even unhelpful relatives, people who make comments we don't find especially helpful, manipulators, etc. may be more skillfully approached with some gratitude for what they are doing than being told how we do not appreciate what they are not doing.

To Anonymous, I think you are misunderstanding

the purpose of this line of comments. No one is a Pollyanna here, we try to deal with all issues and problems. To deny that we are sometimes depressed, resentful or angry at our situations would be unhealthy. Believe me, it really helps to vent to someone who understands and does not try to minimize your feelings. There are other comment lines and forums to look at the sunny side of the street

I think it's also CRITICAL to remember

the "pet gratefulnesses" that we encounter along the way, along with the pet peeves. Like the Hospice nurse who cheerily says "not a problem" when she needs to break her schedule to listen to your mom, the visiting friend who is genuinely happy to come over to see you just when you think things are beyond all hope, the time that you realize you have connected with your aging parent in a miraculous way, .... People who make a "gratitude list" of all the things that go well each day do (much) better that the average person, and this is good advice for us all when times are tight. The government isn't going to keep one for us, I'll tell you that for free, so it's up to each one of us.

I don't know if this would be considered

a pet peeve, although it is often times annoying. I find when I ask my mother to do something (she has dementia) I can see that she tunes me out. For instance, please don't throw the birdseed against the house you can put it in the feeder. I can see her tuning me out and I'll ask if she understood what I said, then she will tune back in. Also, I have shared with her that we put the dishes in the dishwasher as she likes to wipe them "clean" with a paper towel and put them away. I will see her doing this when she thinks I am busy elsewhere and one time she even exclaimed "oh you caught me." I know this probably sounds petty and am just tired of the 24/7 demands of caregiving.

There are many when you have been

a caregiver as long as I, but I will mention a couple. The first is his ambivalent reaction to my help. He has to have it. He is in a wheelchair, and most of the time he is accepting of help. However, at other times he angrily shouts at me to leave him alone. If he wants my help he will tell me. It just depends on his mood. When we are out in public he sometimes shouts the same way at people who offer to help. It is very embarrassing. He is too proud and resents having to need the help of others. The other is trivial, but really gets to me. He wants to direct my every move - turn on the light, put on my apron, get my bowl, cereal, etc. etc.

Also, People who keep patting me

on the head and telling me how amazing I am because I'm handling my partner's disability so well, and they all say they can't imagine how I get everything done from doing all the house and yard work, doctor's visits and working two jobs, etc. ,etc., but when I need someone to come for a couple of hours so I can breathe for a little bit, they always have something else to do - or make me feel so guilty for putting them out, that I finally decided to never ask for help again! And then they come back and say they don't understand why I never ask anybody for help!

When my mom was in a nursing home,

[she has passed away] many times I saw, esp. on Sundays and holidays, crowds of people, sometimes as many as 8-10,including screaming babies and surly teenagers, coming to see Grandma. Then everyone visits, and catches up with each other, and ignores Grandma. Then everyone leaves en masse, and grandma is left wondering what the heck just happened. If you can visit, try going with one or two people, leave the babies and grouchy kids at home. Go at diferent times, and talk to your loved one. Give them undivided attention while you are there, and bring some sort of treat that they can't get there, lke what my mom called "a decent cup of coffee" [ Starbucks] or some cookies or a muffin- they will love anything you bring even if it's only yourself and your attention.

My husband has 3 adult children

living within minutes of us and even though they know he has Alzheimer's they don't even pick up the phone to call and say hello to him. I don't mind having to hire someone to mow the lawn and make needed repairs to our home but I do mind his children ignoring him when he needs them most. Our neighbors and customers at the store where I work are so supportive and helpful and I am constantly given prayer cards and offers of help from them. Most of these people have never met my husband but will be here to help with just a phone call from me. When I am not at work I come back to many messages and words of love and concern. I thank God every day for these amazing people who open their hearts for us and though they don't replace my husbands children or take away the questions when he asks what has happened to his children why do they not love him, it is still a comfort to know that God has sent His children to care for us fill us with their love. God doesn't give people Alzheimer's but He does see us through it and will always give us comfort. My husband refuses to go see the doctors he is referred to by his primary doctor because he is in denial but I know he is getting closer to seeking the help he needs. My pet peeves....tons of them but I am going to take a deep breath and ask myself with each one, is this worth letting myself get too stressed over? Most of the time the answer is no and after an hour or so in the mission chapel I am calmer. Thanks to all of you who share your story. It is a blessing to know I am not alone in these matters.

1. Pharmacy gives generic meds

but doesn't put the brand name on the label! 2. Family member who takes frustrations out on me but is sweet as sugar to every one else. 3. Hearing the 'I wish I was dead' or 'one day you won't have me around and you'll be sorry' routine every time there is even the hint of criticism. 4. Family members who say they will help, but then have recreational plans every weekend. 5 Family members who feel sorry for themselves and does not consider that there are so many others in much worse shape - those dealing with Alzheimers have my utmost respect and admiration. My mother does not know how lucky she is.

When my partner was healthy and

able-bodied, we moved to MD to be close to friends Jen & Jennifer - coincidentally both nurses. Once my partner was injured and eventually disabled - all contact from them stopped. When she went into liver failure and was put on the transplant list - I notified them and asked Jennifer to visit her at the hospital. She said she would. That is the last we've heard from her now 2.5 years later. My pet peeve is friends who are only there for the good times. I also have a pet peeve with my family who has the nerve to be hostile toward her and the fact that I devote myself to her. If I were heterosexual, would they be hostile to me remaining loyal to my spouse? Grrrrrr!

My parents were very fortunate

to have community nursing available at their retirement community, especially for my father who had macular degeneration. Once a week a nurse would stop by to set up two weekly dispenser boxes, one for pills to take in the morning and the other for evening. They'd call in refills or contact Dad's doctor or nurse-practicioner if new prescriptions were needed. Dad placed the boxes in separate locations for morning or evening use. The boxes were labeled for the nurses and me, but he could not read the labels. I had to keep an eye out for any pills Dad might spill by mistake, but he really did a good job taking them appropriately. We recently lost Dad at 90, my mother at age 88, but this service helped them stay as independent as possible. It's fortunate they could afford this community and its health services. All of our seniors should be able to have such service either at their existing homes or in retirement communities. Mother and Dad chose to move to theirs when their house became more of a burden than a pleasure. How wise my parents were.

Anonymous : A smiley face may

feel good, but for those in the midst of the struggle, awareness that they are not alone and others are facing the same hurdles in caring for their loved one can be very helpful and supportive. For me personally I don't want simply "feel good" advice,,,,,

I think articles that are negative,

such as this one, only exacerbate things. They make me more depressed or stressed, etc. The more positive comments I can read, the better for all of us here. Thank you.

almost all of the above and then

some

Unfortunely I have to agree with

everyone about the lack of kindness and caring when it comes to family....I feel very fortunate to have my husband after at very young age...suffered a serious stroke...and didn't get the necesary blood thiners for over 8 hours that he should have recieved within 15 mins at one of the most reputable heath centers available....Yes he was forgotten...But I feel fortunate to have him. The rude looks and friends that have never helped, or seem to care,.children included... No ammount of anger is going to change any of it...We move foreward each day thankful for each day....and look to God for Help....

My husband has stage IV lung cancer

that has metastized to his brain. Pet Peeves? All the Doctor visits, lab work, CT's, MRI's, Cyber Knives, radiation treatments, chemo treatments...it never ends. No cure, only "control". He cannot drive, and I hate driving him, because he criticizes every move I make. I know he is suffering, but I am, too. Sure, the kids come for a week or two at a time to help, and they do, but then they are gone again for another couple of months. Thank you, fellow caregivers for allowing me to vent!! Many blessings to you all.

When family or old friends don't

understand how serious this disease really is. My dads' friends will talk to him on the phone and make suggestions like, drive over for a visit (doc says he can't drive). Then make comments for him to cook something on the stove if he is hungry. I prepare 3 meals and 1 late night snack per day. He isn't really hungry, just can't remember that he just ate. Both of these suggestions are hazardous to his health and the safety him and others. They just don't get it, even when I tell them several times. He doesn't show how he really is in public. I don't know how he does it, it is like he is two people. It is very frustrating but I just take a deep breath and live day by day (hopefully stress free). Thanks for letting me vent. Elaine.

We have been informed that Medicaid

has a recovery Department, after the loss of your loved ones on Medicaid they go after any material posessions they owned, homes ,cars etc. So Medicaid is not a give it is a loan until death. The people who lose are the families left behind. So , set up a trust or get your life in order now. They check back years, if a gift of $ is given , they may want it, transfer of ownership , no help.

Oh dear, Michellepower, that is

a very toxic situation. Please SERIOUSLY consider placing your grandmother in a facility before this kills you. You want to make sure she is well cared for but that doesn't mean it has to be in your home. Talk with knowledgeable people about everything involved, especially paying for it. Check into Medicare or whatever else is available. You don't want to wipe out your own financial future. Please do this while you still have some sanity!!! God bless you.

I had to move my 85 year old Grandmother

in with me in February of this year; but after months of battling her and plenty of others who are misguided and not well meaning. I have had to quit my job to be her full-time caretaker...and she is driving me absolutely crazy! She is overbearing, constantly harassing of me and she always has been. All of this, just at the time when I am struggling spiritually to forgive her for basically being responsible for my mother's death and for driving me into a serious Anxiety disorder with daily panic attacks, since I was a little girl. I am going through a painful separation from my husband presently; and she has done all that she could to ruin us both, even before the Alzheimer's. I find myself so depressed, sad and angry, and yet torn with feeling it's my duty to take care of her. Most intolerable to me is not the Dementia, or the colostomy care or the financial burden, but her disgusting mentality that is also obsessive, hateful and mean spirited. SHE IS EVERY thing that Jesus teaches us not to be! In every way you can think of! Seriously! I am just so broken hearted right now, and don't think I can take much more!

Mine is that my 90 year old mother

still expects that all parts of her body should work as well as they did when she was 40! She can't understand that no glasses will give her 20/20 vision, that her hair is thinning, that she has to take numerous pills a day for her heart, blood pressure, etc., that she has to see so many doctors! She doesn't sem to appreciate how blessed she is to have reached this age in such good condition...she still lives alone, drives herself shopping, pays her bills, etc. We should all be so lucky to reach 90, let alone still be so independent!

I am not in this place with my

mother, but can relate to some of the problems from when my dad died several years ago. However, I have two friends that are struggling with their mothers and one with her husband and I have watched the difficulties with family members and complete disruption of their lives from this terrible disease. You all have as many hugs as I can send out. Please do not listen to people who indicate that God would inflict this disease on your loved one. Most people just don't know what to say and they don't help because they are afraid that they couldn't handle the situation. I know people have different beliefs, but I believe in a loving God. I will pray for you all--for comfort, for rest, and for peace.

DITTO,,,,,,,,,,,,,,,,,,,,,,,,,,,,.

My pet peeve is my sister who lives

1 mile away (the main reason mom and I moved here in the first place) but is very undependable. First, she is allergic to my cats so can never stay in our house for more than an hour, then she just never seems to have time to come get mom or she cancels when she says she will do something. Mom can't stay at her house overnight because she would "wander" out the front door and possibly fall down her front steps. My sister seems to have "all the answers" or at least thinks she is trying to help but has her hands full with her husband, who was just in the hospital with a pulmonary embolus. We just had the whole family here for a family meeting which never really happened to discuss finances and the fact that I need to be working part-time instead of full-time, since Mom is a full-time job. Part of the reason the discussion didn't happen is because my (older) sister was worried about her husband (he was in the hospital the first night everyone was here). It seems like the whole family is just avoiding talking about what I need to help me out. I have 2 sisters and a brother, but I'm the one living with mom. So I guess to boil it all down, my pet peeve is family!

UGH! I thought I was the only

one! I have an aunt (my mother's younger sister) who does not live near by, and shows up for a week about every 5 weeks or so and stays with my mother. She drives me, and the nurse nuts with her "ideas", and her constant phone calls are, at best, annoying! My mom recently said to the nurse, "It's nice when she comes to visit, but nicer when she leaves." My uncle (who deosn't even come with my aunt all the time) recently came at me with a list of things that I am doing wrong. I just want to scream! I am an only child, so not even any siblings to help out, and Dad died 4 years ago.

Yeah - I can relate to all these

issues, too. The one that has me currently frothing at the mouth is the members of my mom's church (I take her every week), whom she says are all loving, caring, helpful people (there have been only four of them come to visit in the five months I've been here) who tell me that I need to take care of myself and need to take time for myself, yet who never offer to come sit with my mom so I can take an hour to do something for myself. I swear that I'm going to give the next one who says that a specific time and day that I'll be expecting them to show up.

Siblings who think that a quick

visit every few months is "helping"!

All of the above, especially the

"disappearing children".....

Venting helps.

I'll add: well-meaning people who

say things like "God doesn't give you more than you can handle." God GAVE US this Alz? I don't think so! Or "God does everything for a reason." Same concept... God DID THIS TO US for some reason? I have to just take a calming breath and say something like "Thanks for your concern and for keeping us in your thoughts and prayers." I've expressed my disagreement in the past and have learned not to. They mean well and they're also trying their best to deal with this gradual loss of my husband - their brother, their uncle, their friend... I try to hear the love and concern behind the sometimes thoughtless words and remember that they care.

Being the ones who have to house

the demented and put up with all the annoying dementia BS when we and our children had no real relationship with this person before she became ill because she has always favored the other siblings and their children, and now that she is ill and her financial situation is in ruin, none of the other siblings or their children want her around, bothering them, disrupting their daily lives, nor can they afford to contribute toward putting her in managed care

Family members who take no active

role in care, but want to control how every penny is spent.

Adult children who go on their

merry way and don't even call to check on their ailing Father!

Oh boy, I can sure relate to everyone

of these!!! I'll need to sit here for a few minutes so I can make a list of my own...

people who don't understand limited

mobility yes, meds that look alike, they are even difficult for me. when I don't catch my mom or husband and they make a big mistake