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Sharon2 Posted November 2008

Desperate need of advice

I've been living with my friends mother now for 8 weeks. She has Dementia and is close to the 5th stage. At first she was relieved and no longer frightened when I had moved in. Now she still has confusion, dilusions and is worried about lots of little things. She misplaces things and thinks her cats are talking to her and the tv is talking to her sending her messages. She has recently, in the last 5 days, become demanding, frustrated with me, she has hit me with her purse and has been feeling threatend by me. She even feels her daughter, my friend, is betraying her. I know this is part of the disease, but the problem is, in a few months we are moving in with her daughter and I feel this may be a wrong move as we both will become her enemy. Is assisted living the best solution for elders with dementia. If she is going to become more demanding and abusive and threatend is it fair to say we will be victims, when we are trying to be the best possible caregivers. She has never had a mean bone in her life until now. I am looking for advice.

baffled Jan 2009
To the poster who said that the hospital didn't want to operate to fix back pain due to his long history of drinking. Let me relate this, maybe it will give you some talking points with the hospital.

When my mother was 89 she had a heart attack. Six weeks later, she passed out on her feet, fell and broke both bones in her leg, totally separating the foot from the leg. The hospital refused to allow the orthopedic surgeon to operate, it was against their policy to allow surgery on someone with such a recent heart attack. As I have her health care power of attorney, they laid all this on me, said the best way was just to remove the foot. Those were fighting words. The surgeon had already told me it would be a very difficult procedure to fix it but he had no doubt he could. The thought of my mother waking up to find her foot gone was totally unacceptable to me as I knew it would be to her. I insisted they allow the operation. They said no. I said they were to do it or answer to my mother when she woke up and they wouldn't like that. There was no circulation in the foot, something had to be done quickly. During our heated discussion it became readily apparent to me that their refusal to operate on the elderly usually boiled down to liability, they were afraid of a lawsuit. Common sense told me that it would be less stress to reset those bones and insert pins than it would be to take off the foot. Sure, I had to sign a stack of papers, but they fixed the bones and four weeks later she was back to her usual self. Moral to the story: DON'T LET THEM SNOW YOU ABOUT THE DANGERS OF AN OPERATION. Yes, operations of all kinds on all age levels involve danger. If someone is in too much pain to be able to take care of themselves, you might want to get a second or third opinion on the risk of an operation. Mostly, they fear losing a patient and the possible lawsuits that might result more than their concern for the patient.

mitzipinki Jan 2009
I think that's a big part of all of this. Where do we find the time for us? I've described the kind of intense pressure like being in a tunnel not much larger than me that goes from under my feet all the way to the sky with no end in sight. I have someone around me all the time.

Even since getting my parents into assisted living, there is always something to do, and always someone around. Even at work the office situation is a bullpen setting and there is just NO PRIVACY! I think that is the thing that drives me the most crazy.

Even if I'm just sitting with my husband and I go off into la-la land, there he is to wake me up out of it and gets me into something else or another demand. I forgot who said it, but my patience has never been lower. My heart knows the correct attitude to have, but my physical and emotional response is one that snaps more frequently than it ever has. I live in constant exhaustion and even with sleeping pills I still can't sleep.

All I can share with others, is take 10 minutes to read if you can, try to get into counseling. Don't let it the stressors of caretaking get too far before your physical and mental health is just too difficult to restore.

Neon, I think you said it best when you said you don't care what others think. That is a very difficult attitude to obtain, but yes, it is possible AND necessary. Thank you for re-itterating that fact. Thanks all!

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msTish Dec 2008
neon, I just read your advice about christmas. This woman will not, give us money for food, or anything. she bitchs if our children (HER GRANDCHILDREN) come over to have a meal.I also serioiusly do't think i have it in me to do all this prep by myself to serve her family that will not even bother to call or stop by to give my husband and i a break, one hour a month. They do not help ever. I feel asthough my husband and i are losing our relationship at a rapid rate and no one cares. A lot of times lately i don't even feel like he cares. I have been begging for one dinner. One I don't have to shop for , prepare, or clean up. Can i ever find the romance back, when latelyy all i feel like is a servant. why am i being so selfish that i think someone should be patting me on the back. Why do i feel the need for acknowlegment from someone. When mom did give me acheck for 250 dollars after 6 months of care giving she actually said to my face that i shold be grateful for that kind of money, what do you say in a situation like this... I am so desprate for a reprive.thanks all for letting me rant, this site is a gift i will always cherish

anonymous5546 Dec 2008
take care of yourself guilt is a useless emotion it solves nothing it gives nothing treat yourself with the kindness and love you give to your parent and it won't be so hard I am so glad you are all here to help me take a good long look at myself Most of the time after reading your posts and posting mine I do take my own advice. Thank you for letting me feel that I am helping you. neon

anonymous5546 Dec 2008
Guilt gee what a word and a usless emotion. It solves nothing. Mother used to use that on us when we were little, it did give us a conscience too much of one in my opinion but you all know what they say about opinions.

Yes,, I agree with mindingourelders, We all have our hands full thats why we are here and I am so thankful for this site, it really helps me take a good look at my situation and find solutions some work some don't but that's life. My husband is not a caregiver either although I have to say he did lots of things for his mom I didn't think was in him. I found him one day before we brought her to live with us. She had put on five pairs of panties because she just couldn't figure out how they went so they were all around her waist, don't ask me I haven't figured that one out give me twenty years and I may LOl anyway he undressed her and put her underwear on got her dressed shoes and sock and off to the hospital they went she had her second stroke, She was with my sister in law at the grocery store and had a stroke, my sister in law got angry with her made her sit down and finished her shopping than took her home and left, called us and said there is something wrong with mom so we went right over and just took her to ER thats how we found out anyway that was a long time ago. yes, we are all human treat yourself with love and kindness just like the person you take care of you will feel better, you will deal with their issues better and life won't be so demanding. love to all and thanks for being here for me to neon

sunshinecaregiver Dec 2008
080760, do you have any idea of what your sister's wishes might be if she had her full mental faculties? If you don't know the answer to that question, you may want to ask yourself what you would want her to do for you if you were in her shoes. There is no known cure for Alszheimer's so would ECT restore her memory while her body repeatedly tries to fight off infections? Would ECT enable her to to swallow, or would she still have to be tube-fed? Is her body strong enough now to withstand a series of ECT's, even? Just sharing questions to help you sort through a very painful and difficult situation. Blessings and peace to you and your sister, 080760.

anonymous5546 Dec 2008
080760 Honey just let her go sometimes Doctors make it so that people live too long. She will be better off. A body can only take so much and electric shock treatments at her age I think that's kinda cruel

msTish it's okay if you have to do all the planning and entertainment it really is fun help her make out a Christmas Dinner Check to you go to the store and have a ball, ya gotta find your fun where you can. Love and prayers to you all

080760 Dec 2008
MY 51 year old sister has the final stages of alzheimer's. She is almost catatonic with foot ulcers, colitis and was just put in the hospital for a blood infection. she lost her ability to swallow. She is constantly getting secondary infections. My family and I are struggling with the decision to put in a feeding tube or set her up for hospice care. Within 3 years time, she went from 160 lbs to 100 lbs. She does not remember any of us anymore and cannot speak. We feel she has given up. I read and researched quite a bit about Electric shock Treatments.

A patient would need several series of treatments for it to work. I just don't know.

msTish Dec 2008
neonwocky, thanks for the advice , I geuss I failed to mention i have no access to this money nor does anyone. no POA, we've been trying she just doesn't think its any big deal.. I love the thought of a mamma's Christmas. I also forgot to mention she.s help less. wheelchair, little arm, hand control.. It would certainlly fall all on me , and this is what she would expect. Just recently we have gotten her to give me 250 a week but I'm buying food and such and trying to manage my own health.. Prayers to all and I hope everyone has a great Christmas...

anonymous5546 Dec 2008
Helping cost nothing it comes from the heart Its a shame family members don't understand that. Yes, a trip to the church should be on your list it will be manna for your soul. I keep you in myprayers to. But I am serious if they want a mamma christmas take some of their inheritance and do a mamma christmas you can sit with mamma and tell her you will help her do it and make her feel like she is still in control. you go girl.

msTish Dec 2008
neonwocky thanks for the advice, my mom-in -law never made arrangments for care. meaning she still out right owns her home has cash in the bank.. The state of Maine seems to think they get to take it all if nursing home is the option. Her family doesn't want to lose there inhertance.Funny how they alll have plenty to live on and never come around, its my husband and I that are totally broke. Financial and physically.I want to put on the brave face and save Christmas, i think a trip to church may help. i was raised catholic but haven't been in church for awhile. I find myself praying a lot lately think i'll give it a try. It was so nice for someone to say they would help if they could, that in itself gave me hope today. God Bless......

anonymous5546 Dec 2008
Hi MsTish,

I feel for you and believe me I can understand. Honey there does come a time when the person you care for is so incapacitated that they do have to go to a nursing home. this is just a suggestion. Have Christmas, this week end invite who ever a hem has the time to come help with the decorations. Than for Christmas have everyone bring a dish. It doesn't have to be done exactly like "Mama" did it after all you are the main care giver now and that includes the care for everyone else. I do hope beings your husband feels the way he does that he helps when he is home from work. Instead of spending so much money on gifts that you probably don't have worry about the kids, and have each man bring a mans gift and each woman bring a womans gift and exchange in that way. Hire someone to help tidy up the house, have Christmas and make sure you buy yourself a treat and wear it and enjoy it and have a nice holiday. Your son deserves that much. If I didn't live down south I'd meet you and help you. My boss just lost her dad this year her mom is in the nursing home and she is very stressed to so I am going over this friday to help her decorate her mothers house and whatever else I can do her family is bringing each a dish and suggest make it one of mamma's dishes they can get together and make a list. This way everyone participates you don't have to do it all and they can't say you were scrooge this year after all scrooge did mend his ways didn't he with the help of ghosts of christmas past. My favorite christmas carol is pretty new it is Canon in D by trans siberian orchestra, it soothes the beast within me. I hope I have been of some help

msTish Dec 2008
Goodmorming all. so I try the I"m not having Christmas thing, and this is what happens. Because I live in mom-in laws home ( not by choice I might add, only because I take care of her) everyone thinks I'm being selfish.I'm about to ruin the holiday for everyone.Christmas is always at this house. She always did all the work, which now becomes my responsibility on top of her care. The family all has REAL JOBS I'm the one with all the time on my hands. Where is this time? I also cna't help but think for the past 3 days we were without power ( we live in Maine), and not one of my husbands family called to see if we were ok, or needed any help. It was my best friend who brought over a generator to help. Caring for mom by little power was alittle stressful. I feel like such a fool, doing what I thought was the right thing keeping her home and out of a nursing home and now I think this is just the craziest thing i have ever done. No one cares about me or what I going through, not even my husband. He thinks I owe this to his mother for the times she helped us in the past. Oh did i mention she doesn't think i do anything right, cooking, cleaning, laundry, . I am a cook by trade by the way , so 1000's of others think I can cook. And when I was raising my son alone I cleaned houses for a living to get by. i' m so sorry I have rambled all morning, but thanks for listening. Oh did I mention as I try to sit here and type she is wheeling her chair over my feet trying to figure out what I'm doing My doctor has prescribed Valuim and it's not working.... thanks for listening everyone this site is a savior for me,

sunshinecaregiver Dec 2008
msTish, one year I un-invited relatives who planned on coming to our home that Christmas simply because all I wanted to do that Christmas was rest. I also declined a Christmas party invitation after previously agreeing to attend because I needed to do that for me. Christmas and some other holidays can become command performance occasions and if that is the last thing you need to do this Christmas, no apologies necessary. Put yourself first. For most of the year, caregivers put others first. Surely days here-and-there are ours to choose to do as we very well please. No guilt, even if you do not have the energy to buy a single gift. Whatever you do, I will be wishing you rest and renewal this Christmas!

msTish Dec 2008
thank you for letting me know i am not a bad person for needing time to myself, how do you all do this 24/7 . my life seems to be in such a mess. i really did not realize till 10 min. ago that christmas is 12 days away. Part of me wants to just run that day and hide. Maybe the family will show up that day and I can , although they don't come any other time would it be wrong to just run away that day?

EXPERT Carol Bradley Bursack, CDSGF Dec 2008
Please contact your Alzheimer's association in your area for guidance. She certainly is presenting the symptoms of later stages of Alzheimer's. You need help for her and yourself. They can guide you.

I know that look when someone thinks you are threatening them. It stabs your heart. It's the fear inside because they don't understand what is going on.

Please keep coming back and talking it out. But get local help and let us know how you are doing.
Carol

susana0226 Dec 2008
I am a caregiver and i work with my mother in law. In 2005 she was diagnosed with alhezemeir's disease, and til this day she presents these symptoms: she does not recognize anybody, she does does not speak, she can't take care of herself neither physically and emotionally, pretty much you can say she is unconcious. Whenever i cross my arm over her she thinks i'm going to hit her, she does not say anything because as i said she cant talk but her expression in her face says it all. i wanted to know what stage she is in?.. and what i could do to help her and myself deal with this situation...

EXPERT Carol Bradley Bursack, CDSGF Dec 2008
You aren't wrong to take care of yourself, and sometimes walking away is the only way to do it.

You've got our hands full, and have no need to feel guilty. One can hope your husband will improve a bit and help out, but it's not looking like he's catching on too quickly. I wish we could give you a magic cure - we can't. But drop the guilt. You are human and have limits.
Carol

msTish Dec 2008
good morning everyone. so last night i really lost it with the husband, walked out left him with his mother and didn't come back till this morning. Problem is I feel no guilt for doing this. I honestly thought I was going to shoot myself if i stayed here one more second.I hadn'T had a moment to myself for over a week. Is it wrong to feel no guilt. WHEN i did return to the house it was worse then when i left. dishes, laundry etc.. My husband did not do anything but put her to bed. How did all this become my responsibility only? Thank you all for being here, letting me vent, and just listening.

sunshinecaregiver Dec 2008
mentalissues, I am with you on prayer. Prayer changes things, even if the only change is my heart and my attitude. God bless you.

sunshinecaregiver Dec 2008
cocapeli, you are a loving daughter and it sounds like you are doing an awesome job. Disagreements happen in any relationship, and for some reason, caregivers act as if we are never meant to disagree with our loved ones. Don't be so hard on yourself. It is so obvious that you love your Dad. Like you, I know that if my Mom dies before I do, I will miss her terribly regardless of whatever caregiving challenges I may have faced along the way. Love never dies. Celebrate yourself and continue to honor your Dad. You are both blessed.

anonymous5546 Dec 2008
sharon2 I think assisted living would be a good thing. Thats why they are there. I took care of my mother in law about 10 years ago she also had dementia and got very mean we had to put her in a nursing home. She would kick things and throw things and became so bad we were afraid she would hurt herself she had already had two broken hips because of her frustrations and fits. and it stemmed from her frustration but it was hard to live with and hard to put her in the nursing home but it was for her best interest.

Austin yes take the hot chocolate to the bathroom, draw a hot bath light a candle play some christmas music close your eyes and remember happier days.

cocapeli How is it going today? Better I hope and How are YOU?

195Austin Dec 2008
Cocepeli51
Would you be able to get P.T. through medicare and they could maybe get a lift for you to use to get him up and back in bed-you should not be lifting him yourself.

anonymous5546 Dec 2008
she refuses all medications from the doctor she is afraid she will become addicted, my mother is very stubborn and it is her way or the highway. Last night she was very rude but I refuse to let her rain on my holidays and just went to my room and than she went to hers so that tells me she just wants to push my buttons and I'm not having any of it. Thanks for your input tho It all helps. Sometimes someone will say something here and it will give me a new view to mull over in my mind. Thank you archie I appreciate you and all of you who are caregivers. Its time for a little treat I have been up since 3 this morning and have a long day ahead of me. So the day will be filled with small breaks. That is how I handle my trying times.

archie2251 Dec 2008
I suggest you contact her doctor immediately, this is normal unfortunately at this time and stage in her life. They have many medications that they can try so it hopefully will calm her down and make your and her life easier. Some may not work but keep trying often combinations work.
Good luck

anonymous5546 Dec 2008
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anonymous5546 Dec 2008
Hello all, Hi cocapeli, Is your Dad doing something he has never done before by having you put him down and up all day. Honey, you are going to wear yourself out for sure. Call an ambulance and let them take him to the ER he may be having mini strokes or something. After reading your post this seems out of character for him although, I know how demanding it is for you. Last night I heard about mothers childhood for the upteenth time same stories I swanee I do beleive she only had three days as a child just joking. But all you can do is be kind and listen she doesn't seem to hear what you have to say on a subject and some people are just victims no matter what the age or the situation and can never put theirself in someone elses shoes. I am so sorry to also, hear about your brother, Ihad a brother who had muscular dystrophy who died when he was 18 I was only 1 1/2 years older than he and it was devastating, now that I am an old woman I know he is much better off. I want you to all think about this very carefully, losing a 13 year old son 27 years ago made me think of this. "There are worse things in this world than dying" yes we miss them but think about it. Don't feel guilty from the day we are born our goal is to die. Well than what can we say or do about this should we be spiritual and let our soul go back to where it came from? That would be a BIG FAT YES. If this is out of character for your Dad call the EMS in your area.

EXPERT Carol Bradley Bursack, CDSGF Dec 2008
You are wonderful! Yes, your dad probably has some alcohol induced dementia, besides his other problems. You have two men you love, both of whom will die, and you are doing the work 24/7 of about 4 nurses. You must get some kind of respite care, or you will break. What happens to them is you are too sick to care for them?

Please get in touch with your social services office or state human services and see if there is some government funded respite care available. You can't keep this up without consequences.

Your attitude and humor are a blessing to all. Please keep in touch, but do take care of yourself.
Carol

cocapeli51 Dec 2008
So it's only been two years but the pressure and intensity of the situation is making my crazy. My dad is 85, has two fractured vertebrae in his back. No one will perform the procedure to ease the pain because he spent the last thirty years since my mom died living the hard life. He now has scirosis (spelling?) of the liver and as a result is considered a dangerous candidate for any procedured that involve possible bleeding. The alcohol and age have taken its toll and his short term memory is almost nonexistant. I think he probably is suffering from some dimentia but he knows who everyone is, knows his name, birthdate, address, phone number and many other things. Pain medication and heat seem to ease his discomfort but he admits he is a big baby, likes to moan because it makes him feel better and has chosen to take the low road and let everyone do for him so he does not have the pain. The end result is he spends most of the time in bed, needs assistance sitting up and laying down. When its time to use the porta potty he can hardly make from the bed to the toilet without falling. Dad weighs about 180 lbs and I am small and not very strong so it is a chore. To top it off, my younger brother, who also lives with us, has end stage renal disease, diabetic neuropothy which has affected his hands so he can't feel anything. Brother has dialysis for 6 hours, 3 days a week. He is depressed, angry at his inabilities and as a result can't do much. I cook, clean, do laundry, grocery shop, take care of dads personal hygiene and toilet events.

So here I am today, got up at 6 am to find dad sitting on the edge of the bed wanting breakfast. It is now 12:30 pm and he has called me every 15 minutes to help him lay down again. I have tried talking to him about how is feeling but he says he fine, just tired and his back hurts. I have lost my cool a number of times today and I do not like my attitude. Lets see up and down every 15 minutes over 6 hours, that means I have lifted him back into bed 24 or 25 times. My back hurts, my legs hurt, I am an emotional wreck and I don't know what to do. I know I can't change the situation but I feel like I should be able to. Hows that for contradition. Had a major meltdown on Sunday and had to leave for awhile because I was afraid I might say something I shouldn't or hurt someone. When I returned home, the two were waiting for me to cook dinner.

Yup, life sucks right now butttttttt I really would not want it any other way because that would mean both my dad who I love dearly but don't like much these days and my brother who doesn't deserve the cards he's been dealt arn't with me anymore. I dread the day that happens than I will be all alone. I wonder who will take care of me when I am "ancient" as my brother says.

Felt good to vent. Big sigh and lots of tears.

lindam Dec 2008
Hang in there Austin, and go to the er to get some relief in the meantime if they can't get you in soon.Thinking of you and hoping you get what you need soon. Thoughts and Prayers

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