when do you know it's time?

[tic chick]

hello friends!

i had posted on this forum several years ago...gee, it's been about 5 to 6 years ago...when my mother-in-law was living in our house and was also having problems with dementia. you all had such kind, wise and understanding words to say then.

now, my mother has dementia.

my mother and i have had our problems over the years. she was not a very nurturing mother for me and at times was very neglectful and abusive. i have forgiven her for that and there is no question that i will support her in this last stage of her life.

i have a brother and a sister to share responsibility for my mother. my sister has addiction problems right now and works during the week. she has 2 children at home, but can help on the weekends and occasionally after work. my brother has 2 adult children on their own and has a very flexible work schedule where he is allowed time to take care of sick members of his family. i have 3 adult children, two who still are at home, temporarily, i hope :). i do not work, so i am home all day. i am looking for part-time work, though.

i do grocery shopping for my mother and take her to one of her doctors every 3 months. since i am home, my mother always calls me when she is bored or has a problem.

today, she called me 5 times because she thought she was having a bad reaction to an antibiotic that she was prescribed for gastroenteritis. i have certification in pharmacy technology for 15 years now and i went around and around with my mother telling her she is not having any serious side effects with the antibiotic. she insists she needs to talk to her doctor tomorrow, a sunday, so he can change her antibiotic. after the 5th call today, i just said, okay, mom, call him if you want to.

i have tourette syndrome. it's a neurological disorder that causes motor and vocal tics. stress makes me tic more. a couple of weeks ago, i developed a new tic after dealing with my mother one day. the tic has gone away, but generally i feel agitated after talking with my mother. i am going to have to learn not to take a lot of things personally, because my mother has this disease and it's her disease that makes her do these things, not anything that is wrong with what i am telling her.

i am sure my frustration is coming through. :(

anyway, i wanted to know what are some of the signs of dementia that would make any of you decide to put a loved one in a nursing home?

my mother-in-law has been in an assisted living center and a nursing home for close to 11 years now. she will be 91 y/o this august. she has no major health problems except for the dementia. she hasn't known who my husband is for about 4 years now.

i helped my husband get his mother into nursing care, cleaned out her apartment and i help take care of her financial and medical affairs, because he is an only child. it was easier, because it was his mother. now, it's my mother and i feel....too much.

jeannie

[Jo6]

welcome Jeanie. I remember you. I was thinking last night about how long I had been hear at BrainTalk aka MGH and I believe I came up with 10 ish years.:D Time does fly.

I'm very sorry about your Mom. I understand the stress that goes with dmentia, no matter the cause. My MIL is currently in a NH, in her last stages of Alzheimer's. As far as I can tell any kind of dementia works about the same.

If I give you bum info, just please forgive me. I'm trying to hang in there and all the very loving people here have been a great help to me.

As far as knowing when it's time to place our LO I don't know of a way to tell. It involves so much. Her safty is on top of that list as well as YOUR health. I will check back in soon.

The others here are a wealth of information and have been a great help to me. I think others will be alone soon and can talk like a person with a brain:eek: As you can see mine is not working well these days.;)

Take care Jeanie. Good luck with your caregiving. I look back over the years and now I realize the caregiver needs a caregiver!! I'll go and stop babbling.

good to see you and hope to see you again, Jo

[rumpled]

Hello there... it is sad when family members go through all this.
My MIL recently passed with dementia. My FIL has it now and my mom probably has it now (or at least, she is cranky, uncooperative and forgets everything...) so it seems to be happening a lot.
As for when... there are a lot of factors - health, money, access to caregivers... the debate over home vs being in a home... there are cost considerations, a home will give you access to doctors more easily since they are there on site, home care has sometimes more attention but less vacation coverage and issues with hiring and weekends and sick days. No one wants to be in a home but we got our MIL in a nice one and had she been there sooner she would have lived much longer. At least the home has activities too. While it seems idyllic to keep someone home, you have to have enough help or it wears out the caregiver(s). We hired a case manager and she was great but my FIL did not want to listen to her advice... hence my MIL developed bedsores, did not have proper care and died a lot sooner. Keep in mind too that they will need a lot of equipment (bed, O2, chair, potty, etc) and all that takes space. Once the loss of er, the use of the bathroom happens, care becomes more difficult around issues of hygiene as a normal bathroom is not set up for showers and I have to say, changing adult diapers is not an easy task for most. I do not envy the aides.

I hope you can come to some peace with your decisions as they are not easy.

[tic chick]

thanks for your replies!

i think right now, my mother would not go into a nursing home and i would not want to get into that argument with her.

she does lack the impetus to do anything. there are activities at the senior apartment complex she lives at, but i don't see her taking advantage of them.

i think she got this gastroenteritis by drinking milk past it's expiration date. i always check her dairy products and dump the ones past the expiration date. last time i was there, she had milk that expired on april 12th and it was already april 24th. i told the doctor at the er that i think it was the milk. my mom said, but it tasted fine. i told her maybe she is having probs with her taste with all the meds she is taking and to go by the date on the package.

she also makes up these fantasies about her doctors. i think the doctors just converse nicely with her and tell her things about their families and she builds a whole story around that. the heart doctor supposedly propositioned her and the next time her primary doctor asked her to marry him. i talked to her psychiatrist about them and she wanted to put my mother on haldol, but i said that the fantasies don't seem to be carried any further than her head and they seem to give her some comfort. i told the psych i would listen for any fantasies that seem to agitate my mother.

jennifer, i am sorry about the loss of your mil and the continuing toll dementia seems to be taking on your family. it is hard to see once vibrant and smart people seemingly lose their minds over several years. my mom worked in a hopital for 25 years on the floor with sick patients and she used to know all of this stuff that i am telling her now about dehydration and drugs. now, she tells me, she doesn't know about all of these things.

jo, i have been lurking in this forum for some time. you give great advice and your thoughts are appreciated. you don't have to apologize for anything. you are under stress and i know that changes your thought patterns. i hope your mil is comfortable in the nursing home and not in any agitation or pain.

thank you all for sharing *smallrose,
jeannie

[Buttons2]

Jeannie,of course every situation is different but I'd think the time for intervention is when your mother is a danger to herself or others. Not just with medication but scissors,knives,etc. I once bought part of an estate,there were new down pillows that had knives & scissors in them,sad thing was the husband had hidden them,then he also got Alz. & they had no relatives. That will always stick in my mind.

I'm appalled any doc would consider giving your mother Haldol!!! Maybe she needs a new doctor? Just a thought. Are there geriatric specialists in the area? In my experience with seeing what Haldol does, I think it could make a sane person go crazy. (I have 2 Schizophrenic's in my life).

You mentioned throwing out outdated dairy,does she have the option of buying meals where she lives? I'd be concerned about fire if she's cooking for herself. And yes,some anti-biotics can have horrific side effects,you didn't mention which one she was on. She also needs to be on a pro-biotic if on anti-biotics for very long,good cultured yogurt might help.

I feel for you Jeannie,you have alot on your plate right now. It's good that you have siblings to help you. My mother is also showing signs of dementia & there are things I've been made aware of from my past that I'd like to confront her with, but realize it would only be for my satisfaction & probably confuse her further,some things we just have to learn to let go of.Nobody is perfect,and I've yet to meet anyone that had a perfect childhood.

This is such a heartbreaking disease! And no dignity is what really bothers me. My HM is showing signs of dementia,hard to figure out what might be the schizo or something else. Last night he wondered where the bistro set was on the front deck......well I sold it last year! And he keeps mixing up his meds,I fear someday soon will be intervention with his kids......I watch him like a hawk when he's driving,so far he's OK.

Well,sorry-this isn't about ME. You hang in there,don't let the phone calls disrupt your own life too much. Easier said than done I'm sure.....how will you know when it's a real emergency?

You're smart & compassionate,you will know when it's time. Trust your own instincts & you'll be fine. Put your own health & well being first.

HUGS Buttons

[rumpled]

The milk reminds me of my mom... she continues to buy a gallon even though she lives by herself as she says it is more economical...
When I went to visit, she poured the milk into a pitcher and we all had coffee. Soon we were all jockeying for the one toilet.
Later, I went to pour the milk back into the container and noted that the milk had expired more than one month before!
We have implored her to buy smaller containers as she only leaves the house to go grocery shopping - but sure enough, every time my brother does a milk check... it is way way over the expiration date.

[tic chick]

well, i have had a load lifted off my mind!

my brother finally had some power of medical attorney, power of financial attorney and last will papers drawn up by his lawyer wife.

i talked to him the other day, because i feel my mom needs someone to come to her house every other day to clean up a bit and make sure she has everything she needs. my mom does some work, but it is sporadic. my brother, sister and i do what we can, but we all have limited time.

my brother and i are going to do this without my sister being present. i want to be my mom's medical power of attorney and my brother can be her financial one. my sister is an alcoholic, who refuses to stop drinking despite treatment and consequences for her actions. i don't trust her to function in any of the mentioned capacities. i love her. i am also realistic.

so, anyway, most of you know i have tourette syndrome. it's a neurological disorder that causes motor and vocal tics. i was in the hospital for 2 days after memorial day, to have an abscess on my thigh surgically incised and drained. i have an open wound in my leg that has to be changed and packed daily. i am managing that well, but the infection seems to have taken a toll on me, because i feel extremely fatigued and i can't do all that i want to do. this is causing me to tic more the last few days.

i also got angry with my mom when talking to her on the phone. she was telling me her litany of woes perpetrated on her by my father and her mother. i came back and challenged her with the fact that she had perpetrated the same things on me that her mother had to her. of course, she doesn't remember what she did, cause she is always the victim and the helpless one.

i can see the futility of getting angry with her. sometimes, i can't figure out how to bite my tongue or ignore the anger. surprisingly, my mother didn't get defensive about my anger or even pick up on it, even though i said the "f" word a couple of times...(i do not have the swearing tic, this was said deliberately). this just shows me how far she is removed from reality at times.

thank you for letting me vent! it helps...for a while,
jeannie

[Tootsie]

Hi Jeannie,
I am glad to hear that your brother has taken the initiative and obtained a power of attorney for your mother. I assume that the legal decision for you to make medical care decisions for you has been taken care of according to your state law. It is very difficult to advise people about the medical issues, as each state has its own statues as to what is legally enforceable.

I assume also, that your mother's doctors are aware of her increasing difficulty with cognition. If you have power of attorney for health care, it is you who should be keeping in contact with her doctors, and making them aware of problems that you encounter. One of the things that I find most helpful when I want to convey information to a doctor, is to write them a letter, and mail it, a la US Postal Service. That serves a dual purpose as you can keep a copy, you have put your concerns and worries in writing, and the doctor can read, and reread it several times before giving an opinion. I also used this with my children, when I was concerned about something. I include times when I am most likely to be home and available to talk, and my phone number.

As for the multiple phone calls, I wonder if she is calling for another reason and using the medication questions as an excuse? You might try calling her every day, or arranging for some other family member to call her, just to ask how she is, and chat a bit. She may be lonely or simply anxious. This was done quite successfully by a friend of mine who was a nurse. Gramma was always calling complaining of some minor ailment, and since my friend was a nurse, the ENTIRE family would refer the problem to my friend! My friend made up a schedule for her 4 aunts, so that each one took one day a week to call their mother and chat. This did not involve an older woman with dementia but I think it would work if the person was still in the early stages.

When thinking about placement in a care facility, you must consider your own needs first. Any time it becomes overwhelming, and affects your own health, your family, and your relationship with them, it is your mother who must make the changes. Keep in mind that there is no way that you can make her happy. That is not in anyone's power. Keeping her safe, out of harms way, having others to care for her needs, is the best any of us can do.
Cheerio.

[Jo6]

Hi Jeannie. Tootsie is right. I really do appreciate that girl;) Buttons, you have good advice also. About the legal part, In SC , these things are allowed only before the patient is dx'ed. It was a race for hubby to make sure things were done right. Had he put her house and property in his name this would have been easier. the state counts the days(UGH) from her DX . He had not done this part. All the others MIL took part in, but not not so sure she understand it all. Any way, hope it all works out for you.

Jeannie, all the others have good advice, I myself need to be remined of all of this.
I'm not making too much sense here so I'll say Hi to all and I'll be back.

Take care of YOU then you can put on your caregiving hat.Love to all Jo

[tic chick]

i went around and around with a conversation with my mother today.

she was talking about the medication, namenda, that her psychiatrist gave her for memory problems. she said that it was helping her, but she wanted to find out from her psychiatrist if she has alzheimer's. i told her they cannot diagnose for sure that you have alzheimer's unless you are dead. so, that seemed to satisfy her.

then, she went back and said that she wanted to know if this namenda was a positive or negative drug for her.

i said, well, you just told me that it is helping your memory, so is that positive or negative?

she said, i don't know. :(

just another phrase in a series that shows me her poor thought process.

my brother's wife drew up some power of attorney and power of medical attorney papers. i went to her apartment last week and talked with her about them. i gave her a basic idea of what the papers meant. i didn't ask her to sign them that day, but said i would come back in a week and she could sign them. i didn't want to flood her with too much at one time. my hubby was with me and my mom has a deep respect for him, so she was easier for me to talk to because he was there.

so, there is good and bad progress.

thank you all for reading my words, taking the time to respond and helping me to cope. all your words mean so much.

*smallrose jeannie

[Tootsie]

Hi jeanne,
One of the hardest things I had to learn, was to lie to my mother. As her disease progressed, and her thought processes became too muddled to follow any logical sequence, I simply made up the answers.

If she was looking for a dress that had been discarded long ago, I told her I had taken it to the cleaners. When she worried about not having money to pay for the lunch she had eaten in the adult care home where I had placed her, I told her I would pay them before I left. When she worried about some bill, I told her I had her check book and had paid it.

You will find that any answer is fine as long as it avoids the anxiety and concern that your Mom has for the subject. I would have responded that Namenda is a wonderful drug and helps many people, and "you should take it ." Keep it simple.....remember the KISS advice. Keep It Simple Stupid.:D I do not mean to imply that you are stupid but we all try to be as complete and reassuring as we can. Sometimes that is simply too much for our Alzheimer's Disease loved ones to process and needlessly complicates the situation.
Cheerio.

[Buttons2]

(((((hugs Jeannie))))))

Is it possible for hubby to go with you each time you visit your mom? Let him take the lead on getting the paper's signed? Somewhere in her brain she still has the power to push your buttons,some things never change ya know? She knows she can't get away with anything with your husband & she might even be intiminated by the male species ( I see this clearly with my own mother). Not to mention the coy flirting! ha

Hang in there Jeannie,you're on the right track. You're a good daughter & chances are she'll never admit that anymore than she'll apologize for her own lack of parenting skills. The future is in your own children,the past is best forgotten (trust me I realize this is nigh impossible to do @ times). Let it go.....

As for those daily phone calls,do you have caller ID? I've learned to let the machine pick up the house phone alot since I have the 2 drunks that upset me whenever they call,we don't have caller ID but I seem to have a 6th sense these days about HM's drunk daughter or my drunk sister calling. At the very least keep the call short,say you have something in the oven or whatever excuse comes handy. Keep a timer close by the phone so you can set it to ding! (see how clever I'm getting?)

[tic chick]

i understand what you're saying, tootsie. i did that today when she called. it just surprised me when she said what she did yesterday, because i still talk to her as if she didn't have any mental processing problems, and i was surprised when she couldn't make a connection that a drug that was working for her was a "positive thing". so, she remembers the word, but doesn't know it's meaning.

what do you all think about a person being told they have alzheimer's disease? do you think they would become depressed if they knew? afraid? or is there a point that they wouldn't understand the full implications of the diagnosis?

pati, my hubby does come with me all the time when i see my mom, because i don't drive. never have. my hubby is an introverted person and he listens more than he talks. my mom is a talkative person, so she appreciates someone listening to her talk on and on.... i think at times i am too opinionated and judgemental and i think she has always liked my hubby cause he listens to her more and doesn't disagree with what she says and when he gives an opinion he is pleasant about it...whereas i think i am more forceful.

yeah, my mom sure did push my buttons, although after counseling i learned how to set boundaries with her. now, i think it's the alzheimer's that is pushing my buttons :(.

thank you both for responding, it helps a lot on the days that this whole situation just upsets me and i need to vent.

*smallrose,
jeannie

[Tootsie]

Jeannie, it doesn't matter if your Mom is depressed because it is an early sign of Alzheimer's Disease. One of the markers is that when A.D. patients are given an anti-depressant, they get worse. I'm not sure where I got that nugget of information but perhaps it was at one of the lectures or support groups I attended when first confronted with my mother's odd behavior.

The most important thing is to get all those legal documents signed, notarized, if required in your state, and make sure that some responsible party has the legal authority to take care of her. That means being able to use her money to buy the services and care she needs.

I'm not sure if telling your Mom anything will make a difference. She may call you every day to ask the same question. Give her the same answer. You might try calling her every day at about the same time, "just to say hello." That might work, or it might not. Sometimes it's just a matter of trial and error to see what is reassuring to her.

For many years after my mother died, I would occasionally find myself bringing up my guilt, and beating myself with it for awhile. My children would always remind me of just how hard we all tried to keep her here at home with us. However, the ONLY day care, available at that time, was being shut down, as the owner was moving out of the area when her husband retired. I had decided that I would not, and could not, give up my part time job to take care of her. I would have resented it, my children's education would not have been possible, and eventually she would have been sent to another place anyway.

It is so very true that we all do the best we can with the resources and abilities that are available to us. Cheerio.

[Buttons2]

Jeannie,I can only speak for myself,but yes I'd get depressed & angry if told I had Alz! I'm kinda curious how they even diagnose it since they need a brain biopsy to know for sure? There are other types of dementia afterall.

I'm glad your hubby goes with you,stressful visits I'm sure. And I think all people want to talk when they have an audience. She has no control over what's happening to her & yet she realizes it's happening right? Kinda like people with Parkinson's? Ignorance might be bliss but the doc's have an obligation to tell a patient what's wrong right?

I think Alz. is alot like alcoholism,it affects everyone.

If you're like me you run conversations over & over in your head,this is what we need to put a halt to. Not productive & it's ruining our own time for living. We can't change our parent's conditions,whatever they may be.

Tootsie has been in your shoes & has excellent insight on how to maintain your own goals & live your life & not let that self-imposed emotion called "guilt" overtake you!

Is it possible to ask your mom to think of one thing everyday that makes her happy? Kinda like we do on our thread here? I know you've mentioned she won't participate in any activitie's where she lives,does she have visitor's besides you & hubby? Can a social worker set her up with a daily visit from a volunteer? Does she have any religious interest?

Kinda seems it's the pits to grow old eh?

((((hugs)))))Jeannie