Return to the Care Givers Forum | Post a Follow-Up

 o
Frustrated, at end of my rope

Posted by dadoes (My Page) on
Sun, Jan 21, 07 at 19:54

My grandmother is 87 years old, had a stroke about four, 4.5 years ago. She's diabetic, on Glyburide. Doctor expects her to do some "assistance" on the treatment with dietary management but she simply cannot understand nutrition. She went to school only through third grade.

The stroke affected her memory and sight. No paralysis. She's blind in her right eye due to a childhood accident along with continued deterioration through the years as the diabetes developed. The stroke killed her right-side peripherial vision, so she has vision only toward the left side from the left eye. She complains constantly about being unable to see, but refuses to believe any kind of "treatment" would keep it from worsening further. She curses her glasses from A to Z. We try to take her for eye exams and new prescriptions, she raises hell about it, that nothing can be done. Last couple times new eyeglasses prescriptions were issued, she was so ornery about getting fitted it wasn't done until six months and a year later.

I keep her stocked with plenty of foods that are good, or at least OK, for her to eat, but she doesn't like any of it. She wants all the BAD stuff. She can't cook for herself any more, or when she does, she doesn't like the results and won't eat it. When I make something, like chicken breasts or fish, she turns her nose up at it. We go round and round and round again arguing about bread, toast (she thinks toast isn't the same as bread, that the toasting process changes it so it's no longer bad -- "I didn't eat bread, I had TOAST!"), potatoes, crackers, etc.

She has chronic constipation, and is supposed to take Metamucil twice per day. I know she doesn't (obviously, I can monitor the supply). When I question her on it, she gets upset to the point of tears that I'm "fussing" at her. When the blockage builds up to the point something HAS to be done, try to get her sticking on a liquid diet, juices, broths, etc., to flush the debris, that's a real challenge.

I refused to buy bread for several weeks. She resorted to making cornbread and biscuits to the ability that she can. Results, constipation again. Severe belly-ache. So I bring a supply of juices and sodium-free chicken broth (which she *already* had anyway). I try to explain what she has done wrong, if she'd follow what I tell her to do it wouldn't happen. Ended up in a big argument again. Drink your juices. I don't have any juices. Granny, I brought two bottles of juice just now, and you already had two bottles half-full in the refrigerator.

She called my sister (who lives about 45 mins away) today (Sunday), said "I don't have any groceries. I'm out of everything." Not true. I brought several things on Friday that she wanted, and her freezer and refrigerator are stocked with chicken breast, fish, lean hamburger, vegetables. She has canned goods, low-sugar juices, gelatin, coffee, tea, seasonings, everything needed to whip up any number of meals. The thing is ... that, isn't, what, she, wants. She wants all the bad stuff that she can chomp on and shoot her blood sugar all to hell.

She has the most awful preoccupation with death of anybody I've ever known. Her brother-in-law called her "Bad News" because the first thing she wants to discuss is who died. She is constantly saying "I should been in the grave years ago." "A person is no use when they get old."

I drop by, ask "what do you need?" She answers "A bullet," or makes a sawing motion across her neck.

She is way past the point of being able to live alone, but there's NO way she'd EVER agree to leave her home. Her mother and husband died there, and she emphatically insists "I'M GONNA DIE IN MY OWN HOUSE." And trust me, she's doing everything she can to speed up that process. And sometimes it's all I can do not to scream back at her, "I wish you would already" .... so I leave instead.

The thing is that the rest of her body is not in that bad a shape for her age. No cardiac trouble. She's on a thyroid supplement now. Some arthritis. The diabetes. Blood pressure is always good. No kidney trouble. She has had several incidents of skin cancer, but is examined regularly.

What'll very likely happen is she'll go blind or suffer another stroke. Everything I do to try preventing that from happening, she fights against the efforts. I've tried using leverage of "do you want to end up having another stroke and being paralyzed? You'd have no choice then in what'll happen." Doesn't work. She accuses me of "wishing" it on her. She's banking on "the end" being neat and clean. She doesn't realize or accept how messy and unpleasant and problematic it may be.

So should I give up? Or keep fighting, trying to keep her in order?


Follow-Up Postings:

 o
RE: Frustrated, at end of my rope

Dadoes, welcome to our world. At least vent here, tell us the problems. We may not have answers for you, but we can at least tell you what a terrific job that you've been doing, and we can remind you to take care of yourself, so that the constant negativity and worry and pressures do not take a toll on you and your health and relationships.

First of all, you ARE doing a great job. I'd keep it up, if I were you, because in the long run, when she has indeed passed away, you'll have the peace of mind of knowing that you did all that was possible for her.

Here are a few facts of life. At her age, and after a stroke, she probably has some impairment. It might be dementia or Alzheimer's. There is something about age and condition that makes the basic personality traits come out stronger. If Grandmother was negative all her life, it comes out now. If she was abusive, it comes out stronger now. My mother was a whiner, and the last few years were really tough on me. So, bottom line, this is a person who is not the same person you remember when you were a kid. ANd now you have the unenviable position of turning into the parent for someone who cares for herself as a child would.

Know what I'd do? She refuses to move, probably would never consent to a live-in helper, either, right? And she wants to die? I'd make sure that all legal paperwork is in order, that any major assets are in a trust (very important if she owns her house---I know, I just closed out my Mother's estate, and having things in a trust will save you thousands and thousands of dollars in legal fees.) Make sure that you and a back-up person (sister? anyone else?) have the medical powers of attorney as well as legal POA. Advanced medical directives. Keep a copy of those papers on hand at all times, make sure that the doctor's office has copies (altho they can go astray in an office, still keep copies). Make sure that you (when I say you, I mean you and a back-up person, ideally) are on file at the doctor's office as having her permission to talk to the doctor and have the doctor talk to you. I can't stress this enough.... you have an irrational 87 yr old woman on your hands, and you can't get caught up in HIPPA rigamarole.

And assume that yes, something will probably do her in in the near future. (Or she's so tough she may outlive everyone else, right?) But always remember that you are doing the best that you can for her.

Get other family members on the same page---that's very important that you all agree on what to do with Grandma. Make schedules as to who visits when, who shops, who gets her to her doctor's appts, who pays the bills, who is on her checking account. Because one of these days all these things will be critical.

Then work on your own mind. Think of it this way, if this were a dog that you are caring for, you know that yelling at the dog won't make the dog behave any better, but it might let off steam for you. I became somewhat of an automaton when talking to my 95 yr old mother. And I worked really hard on not letting it bother me. Which is the hardest thing that I ever did.

And yes, she wants to die. Old age is not nice. Who wants to live this way? She will die someday, but odds are, as you already guess, that she'll have a stroke or something else will happen to change her circumstances and she'll be under institutional care until she dies. No way to get around that, I guess. But you will know that you have been doing the best for her, as you would want someone to take good are of you if you're ever in that position, right?

And please read the previous posts here in this forum. There's other good advice that I've probably missed here.

Take care of yourself. Probably every time you see her, your blood pressure zooms and you get sick to your stomach, right?

I run a weekly support group for caregivers of elderly people, and if you can find something similar for yourself, it'll help you to know that you aren't alone and it's okay to get angry, frustrated, upset, etc. SHare your burden with us online, and with a supportive member of the family, a clergy person, etc. It really helps.

And keep in touch here.

It isn't easy, we know. But hugs to you, and cheers for the great job that you are doing.

Helene


 o
RE: Frustrated, at end of my rope

After the stroke she stayed with my mom & dad (her daughter) for 4 to 6 weeks. That ended badly at the time. Child mothering mother, you know. After she went home, we tried having somebody check in on her several times per week, try to take her to the store or whatever. That didn't work, and granny "dismissed" the woman after a month or so. Being as I'm the family member in the same town with her ..... well, I'm here. My mom and sisters are nearby, 20 mins, 45 mins & 1.75 hrs. Granny has a cousin in town who went through all this with her own father. She checks in on granny often, brings a few things, but doesn't want to interfere. She'd get groceries or take granny on errands, hairdo, doctor, etc., but granny won't ask her. My mother went through all this trying to care for her aunt and uncle (granny's sister, who had no children), so she's kinda burned out and she and dad are having their own health troubles developing now. Dad had a stent done for an aortic aneurysm *and* colon cancer treatment last year. Mom can't deal very well with Granny's negativity and "death wish." That's understandable, I suppose.

Granny has never been mean or belligerant, just negative and morbid. She's the type that will do anything for anybody that asks, but won't ASK for help herself, then gets her feelings hurt when she isn't comforted. She's very put out with a neighbor (they were close for years) who doesn't visit with her any more. Years ago she took the neighbor (or her husband) to emergency room when a broken arm occurred. "I was good enough to help them, now she has nothing to do with me. Hmph!" I asked how did you know she needed help at the time? "She asked me." Have you ever asked her to help you, for a ride to the grocery store, etc.? "NO!" (as if it's unthinkable to do such a thing) So there you have that.

As for finances and property, the only child is my mother. Granny has been a widow since 1964, never remarried. Her two brothers and two sisters are gone. Mom's name and mine are already on all the bank accounts. There is a POA but I'm not sure if it's medical-only. She has a will. I don't know much about trusts, is there something that would be beneficial under the circumstances? I know there's a 3rd-party authorization that can be done for Social Security business, we need to get that handled soon.


 o
RE: Frustrated, at end of my rope

Here's a great source of info on living trusts and wills. I highly recommend putting any real property in a trust, as well as any savings accounts over $10,000. Believe me, it will be important when she dies. Read up on the subject and see what applies to your situation.

I guess what I am trying to say is that it's impossible to make someone do anything, so it will be an uphill battle to monitor everything she eats and her other habits. And she wants to die, so she's obviously no into helping you help her.

So you do what you can. Get her affairs in order. Mainly because that is something that you CAN do, it often helps when you feel frustrated and helpless to have a goal that is obtainable. Note that the Advanced Health Care Directives must be done if she goes into a hospital.

As to a Social Security third party payee, I went thru that. If she will not do it on her own, it requires evaluation from a doctor, which is just a minor statement on the form. In your situation, if she has auto-deposit, I'd just change the mailing address to yours or your Mother's, because if Granny goes into a nursing home, you will not be able to even change her address. If you do the third party payee, then you also have an accounting report to fill out every month and file every year. (PITA) Simplest is just to change her address and make sure she has direct deposit.

Here's the SS link: http://www.ssa.gov/payee/

This all shouldn't fall on your shoulders, but you're the closest. And you do a great job. I will suggest a family conference on "what to do with Granny". If you step up and assume the responsibility, then make sure that no one else in the family is countering your hard work. Have everyone on the same page.

And don't beat yourself up about her diet or habits.

She sounds a lot like my Mother, who never wanted to be a burden, never asked for help, was incredibly negative, whined and wanted to die. It affected my health, dealing with her daily for 3-1/2 years. But she wanted to die, and I did my best to keep her comfortable and safe. That's all I could do, in the long run.

SO keep Granny comfortable and safe. It doesn't sound like you can save her from herself. Nor can you change her mind at this point in her life.

Most important, is to take care of yourself.

Here is a link that might be useful: Elder law information


 o
RE: Frustrated, at end of my rope

I don't have much info to give compared to Fairegold, but I am a semi-caregiver to my mom (86), who recently moved in with us (blind/walker/sharp/almost deaf/on oxygen and nebulizer); my MIL (also 86)(sharp/cane)who lives 2 miles away precarioulsy; and my BIL (47) and mentally disabled, who has lived with my MIL and now deceased FIL his whole life.

Yikes -- I love them all so much. They are all difficult. It is easier for me because I am sure I will be difficult when I am in their shoes.

Hang in there. Remember, you are lucky to have her, and her you!

Adele


 o
RE: Frustrated, at end of my rope

I went by this evening to deliver margerine, check the mail for bills, and refill her medication dispenser. She goes through margerine/butter like mad. I dunno for what. She says for cooking, but she cooks very little. She had coffee made, some dishes in the sink. Everything "OK" except for the usual confusion on various points.

When I left, I got to thinking about if she has another stroke and is paralyzed or blinded, can't get to or find the phone. She has a cordless phone but refuses to carry it to bed, rarely to the bathroom. She'd lay there until I called and got no answer (which in fact sometimes happens if she's outside, so it's not a sure indicator of a problem), or until I stopped by for the evening visit.

She's on a kick now of telling me that "the doctor on TV said diabetics can have [this or that]." I gently point out that the doctor on TV hasn't examined her, doesn't know her history ... you need to pay attention to what YOUR doctor says ...


 o
RE: Frustrated, at end of my rope

Look into a LifeLine system from your local hospital. There's another thread about that.

But my Mother was a lot like your Grandmother, and when she fell, she stayed on the floor all night and didn't use her system. She didn't want to bother anyone. But it made me sleep better knowing that she had it.


 o
RE: Frustrated, at end of my rope

My name is PJ. My father is 80,diabetic and obese. I have done work professionally and personally helping people who are elderly,terminally ill or mentally impaired.
My dad eats total cr*p. His diet is hideous! If he didn't have good genetics he'd have died 20 yrs ago. To top it all off he hoards.
I love my dad. I go in and clean up 2-3 times a week. I do the best I can with all the stuff everywhere. THIS IS NOT MEDICAL ADVICE. I am not an MD.This is my own personal experience!
I say nothing about his diet. Nada zilch. I keep my winces to myself. Why? He's 80! What's the point? He's in end stage of life. He'll joke about having cookies(pointing at the package he just scarfed) I'll look at it in mock horror and give him what might be a last kiss.
I stuff all the stuff he just can't throw away in boxes. I keep a clear path so he wont get hurt. I say nothing about the urine in the trashcans even if it makes me gag.
Why would I want to fight over what he wears,what he keeps and what he eats when I could lose him tommorrow? Just a thought.PJ


 o
RE: Frustrated, at end of my rope

PJ
I remember a house that sound alot like your fathers. We just watched, waited and prayed to God to give us a real sign that it was time.
It is a hard place to be, waiting for her (mil)to get to the point that she wouldn't put a fight(a legal one that she might win) about us moving her, or they can't fight anymore.
Good luck to both you and Dadoes. You are doing the right things-it is just hard. Often times it takes a disaster (hospital stay or a fall)--at that point you can step in and do what you maynot have been able to do the day before. We were just about to the point of asking the health dept. to make a visit when we finally got her to move.
Connie


 o
RE: Frustrated, at end of my rope

I agree with Connie. Keep Granny or Dad safe and comfortable, take care of the things that you CAN take care of (legal issues, shopping, etc), and don't stress yourself worrying about a proper diet, etc. Yes, you may have a crisis, but if you have all your paperwork in order, you can handle anything.


 o
RE: Frustrated, at end of my rope

Dadoes, other posters, I'm new to this forum, but I know there's got to be a special place in Heaven for caregivers. I just ended 24/7/365 x 5 years of inhome caregiving for my almost 91 year old Mother who has "Alzheimer's type dementia". She went into a wonderful nursing home just before Halloween. Eighteen months prior to that, we had her enrolled in a terrific daycare program a few days a week where the staff took over the bathing duties and she had access to a hair salon, etc. That was time off for me to do errands, see an occasional movie, work in the yard, or just sit and stare at the wall. But it was getting harder and harder to get her organized and up and out for daycare. It was time and, besides the sharp mental decline, the signs were there - more and more unstable on her feet, episodes of choking on food - that she needed more care than I could provide. Fortunately, in Mom's case, all her financial, legal and end of life affairs are in order. And she's close by so I spend time with her almost every day although I'm starting to feel a little less guilty if I skip a day.

On the practical side, early on I had my name added to her checking account so I could easily take over writing checks for the day to day household expenses for as long as she was still at home.

I understand full well how hard and frustrating it is to try and look after someone who is resistant, who no longer has the ability to reason or be reasoned with. You do the best you can and try to accept the idea that these beloved oldsters are starting down a path from which there isn't any return despite our best efforts.

For a couple of years during the five, I was also simultaneously looking after Mom's older sister who was still in her own apartment. She had her wits most of the time and was willing to grant me her Power of Attorney, update her will and name my younger brother executor of her sizeable estate, but she was dead set against the idea of a living will or any kind of medical directive. And ultimately, for Auntie "the sign it was time" was a medical crisis that sealed her fate. She developed a raging bladder infection, went to the hospital and although they loaded her up with antibiotics and what not, the doctors and social workers were very frank in indicating she couldn't return to her apartment. And it was out of the hospital and into a nursing home.

So, I've learned a few things that most of us learn. As people age, their idea of independence gets a little skewed - being in their own home is the last shred of independence and we caregivers give it our best shot to keep them there. You clean, provide groceries, chauffeur to dr's appts., dole out meds and try to see if they're being taken, etc. and then it dawns on you that you're rowing upstream. But you keep on because it's the right thing to do.

I'd say to you, do what you feel you can but never beat yourself up thinking it's not enough. Your loved ones are lucky to have you!!!


 o
RE: Frustrated, at end of my rope

I hope I don't get flamed for this ---
When my in laws started failing the nurse in me was upset with DH and SIL, I thought they were not doing enough. As I got more involved I realized they were doing all that in laws would allow. Then my parents started to fail and the nurse in my went out the door - I was the daughter and clearly saw all you can really do is as much as they allow. You are doing a wonderful job with your grandmother (as much as she allows!) Food for thought, an 87 yr old stroke survivor, diabetic, widow with other eyesight issues, that wants to die, is it so bad that she doesn't eat properly? Yes it will likely hasten the end but will her last months/years be happier? Trying to fight her hasn't helped. Not fighting her and just doing what she will allow isn't giving up.


 o
RE: Frustrated, at end of my rope

Eandhl...........You wont get flamed from me. I agree 100%

I look after my 86 year old dad. I say look after because he has set the line and I know it is not yet time to cross over it.
His mind is mostly good. He gets confused at times but knows it. He has give me all the powers. We have trusts, by pass trusts, and he runs everything by me daily. He told his attorney that when I call and tell him its time for me to take over to do it.

He lives alone, cooks, grocery shoppes and dose laundry. Boy my mom would just giggle if she knew he dose laundry. We lost her almost 3 years ago. We had to have lessons about using the Downey ball. Very funny! I did hire a house keeper that comes in and cleans once a week. Around the time my mother died he lost all and I mean all his friends with in a few months.

I realize I am very lucky but also realize things could change very quickly. Dads only health issue is fluctuating blood pressure. His blood work is great, probably better than mine, He has sleep apnea and has had a bypap for the last 10 or 12 years. He is also about 85 pounds over weight. When his Dr. suggested a diet I could tell by the look on his face that was not happening. I point blank ash him if he wanted to change his eating habits. I told him it could make the difference in how much longer he might live. I also told him this was his decision and I would go along with what ever he decided. To me it is a quality of life issue. Sure I could mag him and make him miserable about what he eats. But I would rather he be as happy as long as he can be. If it shortens his life so be it. It's his choice.

The last few week of my mothers life several family members were trying to force her to eat. It got to the point she would just cry and finally begged me to please make them stop. I did and made up my mind that I would do what ever it took to make her comfortable and feel like she was in control. I will do the same for my father. I want him to have his dignity and feel like he is in control as long as possible.

Again I know how easy I have it compared to most of the care givers here. I went through quite a lot with my mothers last few months. I wish I would have found this place then. I really needed to rant a few times and my poor husband had to listen to it all. I know how frustrating it can get but I try to keep it about him and not about me and what I want.


 o
RE: Frustrated, at end of my rope

You've been given some excellent advice. One thing you can be sure of, and that's one day soon, she's going to end up in the hospital. Sooooo, make plans to have her discharged directly into a nursing home. You need to pick out one that suits you best, get the paper work in line, and then wait.
I know that what is worrying you the most is the idea that she might die all by herself. That could happen even if you were in the next room. It might even be easier than if she is in a hospital all hitched up to tubes and oxygen.
Remember that eating what she wants and complaining about her life is about the only "pleasure" she has.


 o
RE: Frustrated, at end of my rope

All the points brought up have been considered already, but seeing/hearing them offered again helps clarify. My concern about letting her eat what she wants ... is that she complains constantly about feeling bad, constipation, eyesight failing, feet burning (diabetic neuropathy), etc. Proper diet would go a long way to easing those conditions. Deteriorating eyesight can't be reversed but it could at least be arrested from getting much worse. What's the reasonable trade-off between one way or the other?


 o
RE: Frustrated, at end of my rope

Diabetic neuropathy? Is she on Neurotin? Check it out, this drug was a wonder for my mom's neuropathy. I had to suggest it for both my MIL and mom. Pain -- see if she will go to a pain clinic. The elderly deserve pain relief too. Constipation--have her take a stool softner (like colace) twice a day. Bandaids -- yes -- but they can each help comfort alot.

I would then let her eat what she wants! Adele


 o
RE: Frustrated, at end of my rope

What's a reasonable trade-off? Like Adele says, make sure that her medications are as good as possible for her condition. As for proper diet making things better, sure, of course you are right. But the price for getting her on a good diet means preparing every meal she gets, and monitoring everything that is in the house, or getting her into assisted living with supervision and proper meals.

That's not going to happen, you say? Then consider quality of life. If in a perfect world, she has excellent 24 hour care and a perfect diet, what would you expect for the quality of her life? She doesn't want to live in the first place. She's 87. Let her be to enjoy what she enjoys.

I have heard it a thousand times.... at this age they worry about and complain about three things: bowel movements, money and the food. That's about all she can complain about. That's how much her world has shrunk.

Tell the doctor that it is impossible to improve her diet. Remind the doctor that she's already had a stroke and has memory loss, and she lives alone. Make sure that the doctor understands all this.

Then you've done everything you can.

Keep her comfortable and safe. Don't try to change her. She's not going to change.

Heck, go over there, pick her up and go out and treat her to an ice cream sundae, and ask her to tell you about her early life, or tell her a few jokes. Make her laugh, and you've done more to improve the quality of her life than a "proper" diet would do for her.


 o
RE: Frustrated, at end of my rope

Couldn't agree more with Adele and Fairegold. Do you accompany your Grandmother on doctor visits, etc? Sometimes physicians don't get a true picture since many elderly patients will respond they feel fine, nothing hurts, still play golf, yadda yadda. Fortunately, more and more doctors are becoming aware of the need for pain management. I don't have any first hand knowledge of Neurontin (sp), but a friend takes it for relief of neuropathy from MS. I think she also was given oxycodone. And the fear of addictions is pretty well unfounded for those in genuine distress. And would that matter anyway?

Also, Dadoes, have you had a "Family Meeting" about your Grandmother with your Mother and sisters? That could really help getting everyone on the same page. Those who don't provide the continuous level of care you're giving may not really understand what's going on. I doubt that there are many of us out there who ultimately became caregivers who didn't go through a period of denial. But maybe you could come to some general agreement that your Grandmother is too vulnerable to be in her own home for much longer and she may need long term care. Short of moving in with her 24/7, safety is going to be an issue somewhere down the road. Falls, etc. happen so fast. God knows, I'm not advocating placing someone in a nursing home, but the possibility that it'll have to be done is always lurking - we fought it with my Mother as long as we could.

Now that I've had a couple of months to reflect on all this, I realize now that I prepared for caregiving by thinking in terms of the physical aspects only. I totally overlooked the mental stress involved and the emotional toll it can take. I really thought I was "too well adjusted" for that. Was I wrong!


 o
RE: Frustrated, at end of my rope

Dadoes, I think you've gotten some good advice. It's hard to let go when you know some conditions can be so easily fixed by good diet. I know I've been struggling with that same issue these last few months. And I, too, needed to hear the advice.

My mother has been battling constipation for over a year. She was hospitalized in November for a week because she didn't have a bowel movement for over two weeks. By the time she was done with a week's worth of super strong laxatives & manual extractions, she was too weak to return to her assisted living facility. So she had to spend another week in a skilled nursing facility.

Since she went back to her assisted living apartment, I've worked so hard to keep her supplied with fresh, frozen & canned fruits and vegetables. I bring her bottled water and tell her she needs to drink at least one bottle daily in addition to hot tea & juice at all the meals in the dining room. I remind her constantly to order a side salad or fruit cup with every meal. I lecture & lecture, remind & remind. And, yet, when she goes on the weekly grocery store outings, what does she come home with? Cookies & candy!

Yesterday I finally realized that my harping about eating high fiber foods was pointless. She's just not able to make the connection any longer. My constant nagging, checking her fridge, bringing cooked vegetables, etc. is not helping.

One good thing I've been doing (similar to Fairegold's suggestion) is that at once a week I take her out to lunch. Since my mom has severe macular degeneration, she can't read the menus, and I order high fiber dishes that she likes -- salads, spinach & artichoke dip, eggplant parm, etc.

You're doing a good job with your grandmother. She's lucky to have such a dedicated granchild.

Sue


 o
RE: Frustrated, at end of my rope

Well, you won't believe what my doctor said about diets for the elderly, but I will tell you anyway. LOL He said it didn't matter what they eat because they are not building strong bones or a strong body anymore. "let her (my mom) eat what she wants, if she enjoys a package of cookies, let her eat them. It's probably the only pleasure she has left". Mom is 94, living alone and not a diabetic, but even if she was what would happen to her if she didn't eat right, she might die??? Mom's greatest fear is going to a care home, if would be better for her is she did die. She went to the hospital a couple of months ago and it took 4 nurses to get her in the room and get her in bed to strap her down. That is what my mom has to look forward to if she goes to a home. My husband is in an Alzheimer's unit, every day it takes 3 people to dress him, change him, put him in bed, get him up again or give him a bath. The doctor and I ordered "comfort care" only. No meds or procedures to keep him alive. Please don't take this wrong, but my advice to you is, not to argue with grandmother, she may not remember it 2 hours after you go home anyway. Let her eat what she wants. She needs love and comforting. My sis is mom's care giver and often when I go see Mom, she is upset and crying because my sister has been bullying her into taking her meds, eating right, changing her clothes. That leaves my mom so angry and upset. She took a broom to her granddaughters when they started telling her what to do. Good luck to you what ever you decide.


 o
RE: Frustrated, at end of my rope

Dadoes, you are doing a great job with your granny, try to hang on to your sanity! I can only imagine how hard it must be, but I know what you are saying about being with someone negative and morbid. My 85-yr-old mother is very similar in attitude and getting increasingly frail, so I'm afraid my brother and I are in for a similar experience to yours.

I found an excellent article on "Care for Caregivers" from Prevention magazine and have provided a link to it. I hope it helps you and maybe others too.

BTW, if you've been having difficulty getting her to eat Metamucil, you might want to look for Benefiber. It's as effective, but doesn't thicken liquids or have any noticeable taste, so it's a lot easier to "hide" in any solid or liquid food. Remember with any fiber product you start slow, then gradually increase the dosage. It's going to be hard to get her to drink enough fluid, I'm sure -- I've noticed most people do not hydrate themselves sufficiently. It's a difficult habit to learn, but keep trying!

Here is a link that might be useful: Care for Caregivers article


 o
RE: Frustrated, at end of my rope

Typical scenario ....

Last week (or the week before, whenever) Granny got into a tizzy because she wanted to mow the yard (in *January* mind you, but this is south Texas so it's not particularly unusual to mow once or twice during the season .. but she really didn't need to do that) and her mower wouldn't start. Bad battery. I didn't have time to deal with it *right away at that moment* so she stewed on it for a day and called my parents. They came and dad (her SIL) changed the battery. She promptly hopped on it and got to work attacking the clover (she has a vendetta against clover). Dad said she couldn't have been happier if she'd won a lottery. This was Fri afternoon, I think.

Saturday one of my sisters came through and we fetched granny to my parents for a visit. Everything was lovely.

Sunday she caught a "crick" in her back. I had work to attend, but I called her morn and evening. Told her to use a heating pad. She was in a bad frame of mind and wouldn't even go look for her heating pads (she has two). She refused to believe that riding around on the mower had *anything* to do with her back. This is two days later, so she simply *cannot* make the connection.

My mother had to go take care of the grandson for a couple days while my sister had an intensive project at work. Granny called Mom Monday, but she wasn't there so my dad got all the details. He was concerned that she really was having a problem, so HE came and took her to the doctor, which is something wayyyy new and different. X-rays were done, nothing serious found. Tylenol twice per day, and heating pad ... which I had *already* told her to use her heating pad, but she wouldn't listen to me.

Side note: She couldn't find either of her heating pads and dad didn't want to rummage around looking, so they bought another and now she has THREE. I found both of them right away.

She expects the back pain to stop immediately upon visit to the doctor. She doesn't understand/accept that it takes nurturing and time, and rest.

Another side note: dad took her to doctor on Monday. She has a scheduled appointment, with the same doctor, on Friday.

I took her on Tue morning for lab/blood work in preparation for the Friday appointment. She had taken her morning medication, which she is NOT supposed to do that of course before the lab ... but not much can be done about that. I don't know if she ate anything, she couldn't tell me if I had asked.

She's still having back pain, in a bad mental state.

When we leave the clinic, I ask if she needs anything from the store, being that we're already in town. She doesn't know, doesn't think so. OK, we head home. I heat a bowl of sugar-free oatmeal, she has that and coffee. I get her settled and head off to work.

I call at 6:20 PM to check on her. What's in the mailbox, how's your back, did you watch "Vanna" (Wheel of Fortune), etc. Tell her I'll be there in about a half hour.

She called back two mins later. Needs toilet paper. Not a roll in the house.

[sigh]

...............

Sometime along the way, after Monday, she called Mom and unloaded. All the usual about chopping her head off, yada yada. They must have had some heated words. Mom called to tell me about it, said she was trying to recoup from being out for the couple days, cooking chicken or something, etc., when granny called, so the doom-gloom-chop-the-head-off hit her the wrong way. We laughed about it a little. Mom said she told granny we can't chop her head off or we'd be in jail. I laughed, because I've told Granny that exact same thing numerous times.

Mom takes her to the actual doctor appointment. I used to, but .... long story ... I refuse any longer to be in the same room with THAT doctor (he's a deadbeat, skipped out on a bill at the business where I work). I told her to advise them if the bloodwork numbers are kinda off-kilter, that granny had taken her pills that morning, and may or may not have eaten. She is planning on taking granny out for lunch after the appointment, if granny is in a mood for it, and to grocery store, etc.

By the way .. I am a grandSON ... in case that isn't clear.


 o
RE: Frustrated, at end of my rope

Sounds as if you have had a time of it!!! It's not going to get better either. Now, I know it's easier to give advice than to really help with the problems, but here's a thought that might make life easier.
It doesn't do any good to disagree with her about things like the back pain and the mower or the heating pad. Just say, "yes, you are probably right." and let it go. Agree with her no matter what. Forget what's real, just go along with her reasoning. It will be easier in the long run. And it will keep her from getting more upset. You're not going to get her to see things your way. You can bet on that!


 o
RE: Frustrated, at end of my rope

The situation has deteriorated now to the point that she cannot manage herself. A month ago she called her cousin, complaining of urinary burning. Granny got upset with the cousin when she called my mother. Mom took her to a new doctor (the regular was out of the office), who immediately saw the situation. Mom kept her at their home for two weeks, got the infection cleared and granny in better condition with proper meals. It was an ordeal. She has lost all concept of time, after one night she insisted she had been there for days.

Now we have a "sitter" coming Mon-Fri morning to make sure morning meds are taken properly, breakfast, lunch, and prepare an afternoon snack and a supper plate. I stop by at 1:30 PM to confer and check what business I may need to handle, the sitter leaves and I stay for an hour or two. I call to check that she ate the snack, then again on the supper plate. I go there 2 hrs after supper to check her glucose level and get a bedtime snack. Occasionally it works. More typically it does not. I'll call, she'll tell me she ate the snack, or had the supper. When I get there, I find the supper plate untouched. One evening she hid it in the crisper drawer, I didn't see it, reasonably thought she had supper. The sitter found it the next day.

Today the sitter couldn't come, was down with a virus. So I went at 8:30 AM (which is tricky when I go to bed at 4 AM after working a night job). The morning went reasonably well. I left her alone for a couple hrs to make lunch at my house (I live about just up the road). Called to remind her I'm bringing lunch in a few mins, she had already gotten into something else, but couldn't tell me what on the phone. I told her not to eat it, leave it out so I can see what it was. I got there, nothing to be found, she claimed it was a snack cup of gelatin/peaches. We got through that OK, she ate the lunch. I prepared an afternoon snack, and a supper plate (same thing as was the lunch, small salad, one chicken tender, about 1/2 cup green beans). I called at 3:40 to check on the snack, no answer. I figured she was doing a bit of yard work. Called again 30 mins later, she claims she had been napping (which she *should* have heard the phone) and had eaten the snack. I reminded her again to eat supper at the proper time so I can check her blood at 8 PM. I called at 6:40 to check. She said she ate the supper (Did you spray on salad dressing? Yes. How was the chicken? It was good.) When I get there to do the nightly blood check and bedtime snack, I found the supper plate, again untouched. She insisted she had eaten a chicken plate, that there were two in the refrigerator. Not possible. Only thing I can figure is she was remembering the LUNCH plate and confused it as having eaten supper. Unfortunately, she got upset, I got upset, and it was a bad scene. I should have GONE there to check on supper, not just called. Her glucose level was low, 89. She refused to have an evening snack, stating that she'd rather die. Crying and absolutely unreasonable. Jump the lake (her term for suicide), throw all the pills away. I left.

The sitter is not coming again today, doesn't want to take a chance with the virus. I told granny she'll have to come to my house for the afternoon so I can "make sure she follows the schedule." She said nobody is taking her out of her house. I asked her if I should come or not. She answered that she isn't forcing me to come there. I tried leaving her be last weekend, after a blow-up on Friday evening. The sitter had meals prepared for lunch & supper on Sat & Sun. She called me Sun morn, sobbing that I'm mad at her since I hadn't been there. She had eaten three of the plates, who knows what else and on what schedule. Her glucose was wonky, she was confused on numerous points and details.

I'm ashamed to say that I'm at the point that I feel it'd be better if she'd die. Nobody is getting any benefit from the efforts we're putting out. She's resisting with all her might, we're fighting back, and everybody is exhausted. It has been suggested to let her do and eat what she wants. Sounds easy, but the "end" isn't guaranteed so graceful and grand as she believes it'll be. What happens when she has another stroke that results in paralysis or blindness or a complete vegetative state? Who'll take care of her then?


 o
RE: Frustrated, at end of my rope

Remember my basic advice about keeping her safe and comfortable? She is neither, unfortunately. You need to see that she gets a LOT more supervisory care at this stage. Yes, she does not want to leave her house, so you can either force it or you can hire more caregivers for more time every day.

You are making the mistake of expecting her to be reasoning and mentally functioning. Unfortunately, she showing signs of more advanced dementia, and is just shining you on.

It's only a frustration for you, and no real solution. Have you looked into long-term care facilities yet? That is in her future, for her own safety and comfort.

Good luck, but you really have to change horses at this stage and try something different. You've done a stellar job so far, but I do think you have reached an impasse and need to make real changes. For her safety and comfort and for your own peace of mind.


 o
RE: Frustrated, at end of my rope

She would never go willingly into a nursing home or assisted-living facility. Never. If forced, she'd hate us for the rest of whatever time she has left .... although we're already nearly at that point of feelings anyway. There's also the financial issue. Cost of the part-time sitter exceeds the margin left after normal monthly household expenses, much less to get a nursing home involved. It's too late to make arrangements to protect her finances.

This morn things seemed to be going fairly well. Glucose 99. Had meds, made breakfast, coffee. We were watching Price is Right which she typically enjoys. I noticed she was sitting in her chair crying quietly, shielding her face from view. I'm on the way back for lunch, after an hour doing a couple chores at home. I'd like her to come home with me for the afternoon, but I know she'd refuse.


 o
RE: Frustrated, at end of my rope

"You are making the mistake of expecting her to be reasoning and mentally functioning. Unfortunately, she showing signs of more advanced dementia, and is just shining you on.......Have you looked into long-term care facilities yet? That is in her future, for her own safety and comfort."

Ditto, sorry to say. Hard decisions ahead. Very difficult when things evolve the way you've described. Reality has a way of dashing hopes and wishes.


 o
RE: Frustrated, at end of my rope

To add to what both Fairegold & Asolso said, having one so-called "good" day or afternoon does not mean that things are under control and manageable. The "good" moments are the aberration; the norm is the stubbornness, belligerence, confusion, etc. Do not make decisions based on her few moments of clarity & cooperation.

I know how hard it is to accept that this is her state and that things will not get better. You have done a wonderful job so far, but things have changed.


 o
RE: Frustrated, at end of my rope

Well, she did come with me for the afternoon. We had a good, calm time. I made a favorite "special dessert" (low-carb no-bake pumpkin cheesecake in custard cups with no crust), she watched, questioned, and filled the cups. She watched TV while I worked on a computer, said she was sleepy but wouldn't lie down ... although she did for a few mins upon arrival. I fixed supper, which she liked. Then she got antsy about going home to take her evening pills (damnnit, I shoulda brought the dispenser along). I took three of the custard cups but hid them in her 'fridge, and instructed her not to eat anything until I come back in an hour to check her blood and it's time for the bedtime snack. She agreed ... "Not even the pumpkin." She said that I should just stay instead of coming back. I laughed, said "You wanted to come home and not stay at my house longer. You could stay there longer and I'd only have to come back here one time to bring you." She poohed on the idea, said "I was already there all day since morning!" (Lack of time-passage awareness.) When I went back, found she *had* eaten again, but just a veggie snack bag far as I could figure (a couple celery & carrot sticks, one cheese stick), so I guess that's not too bad. Glucose was disconcertingly low again, however. The sitter should be back tomorrow morn.

Yes I know today isn't the norm, but it's nice to have when it happens.


 o
RE: Frustrated, at end of my rope

What you're dealing with is, unfortunately, somewhat typical. You've reached a point where you can't be sure what state she may be in from day to day or moment to moment. You can't be sure whether she's OK or doing something stupid or failing to do something she needs to. And the consequence of even something small happening can be grave. The only solution is attendance and/or supervision -- meaning someone with her. Unfortunately, that's expensive and/or inconvenient. If she's in the state you've described, you'll never have peace of mind about her without that. Very difficult. And no telling how long it may go on. Glad you and she are able to have some good times, still.


 o
RE: Frustrated, at end of my rope

dadoes,
are there any "adult day care centers" in the area you could take her to? Or even if she won't budge, you can attend a support groupfor caregivers.

Also, if she can NOT do two activities of daily living by herself (it sounds from your description that she still can), but if she can NOT either bathe herself, dress herself properly, feed herself, toilet herself, or is incontinent, or needs help to transfer from bed to chair, etc., you could ask for her doc to order a hospice evaluation. There is a medicare hospice benefit. If it is not that far along, do keep it in mind for the future, as she is declining. They are wonderful for both the person needing it, and the caregiver (you!)


 o Post a Follow-Up

Please Note: Only registered members are able to post messages to this forum.

    If you are a member, please log in.

    If you aren't yet a member, join now!


Return to the Care Givers Forum

Information about Posting

  • You must be logged in to post a message. Once you are logged in, a posting window will appear at the bottom of the messages. If you are not a member, please register for an account.
  • Please review our Rules of Play before posting.
  • Posting is a two-step process. Once you have composed your message, you will be taken to the preview page. You will then have a chance to review your post, make changes and upload photos.
  • After posting your message, you may need to refresh the forum page in order to see it.
  • Before posting copyrighted material, please read about Copyright and Fair Use.
  • We have a strict no-advertising policy!
  • If you would like to practice posting or uploading photos, please visit our Test forum.
  • If you need assistance, please Contact Us and we will be happy to help.


Learn more about in-text links on this page here