I am new, and I have to vent or self destruct!!!

ArizonaTartNovember 30, 2005



I am new to this forum.

I have been going to the Cooking forum and the Recipe forum for a long time, and then finally joined.. just before they got rid of the darn 15 smackers rule.

My name is Susan. I am a caregiver.

I take care of my mother-in-law who is 83 years old, soon to be 84, (if I don't kill her first today!, and I also take care of our sweet little almost 17 month old grandbaby girl, who is the light of our lives. I have granny-kins under the same roof, 24/7. And, we have our granddaughter here about 85% of the time, or more.

Granny-kins vacilates between an Alzheimer's stage of 2-3 to 4-5 depending on the day and whatever. She does have Alzheimer's, but she also has frontal lobe dementia, vascular dementia, stenosis of her spine at the brain stem, and they've told us she has Pick's Disease, and often times refer to her as having "Parkinson's Dementia" as well as Alzheimer's. Sooo.. okay, her brain is toast.

HOWEVER.. her memory isn't all that bad, in fact, it is usually pretty good. She can pass all the normal tests for Alzheimer's. She goes to a world class neurologist who is acclaimed for his work with Alzheimer's, and all forms of dementia. He cites her as being one of his more rare patients in the manners she exhibits her brain damage/diseases. Long story.. but trust me on this.. her reasoning and logic are reeeeeeally bad. She has very intensely strong and admirable coping skills, but functions in a world of twisted logic that can drive you batty. And, from time to time, her memory goes too. Sometimes she gets pretty fruity in that department too.. but not as often or as regular. She has difficulty with her pooping and peeing, and refuses to acknowledge that fact. She washes out her depends and dries them in her room.. ruining the plumbing, and our nerves.

We live in a larger home and we are able to give her a full thousand plus square feet of her own living areas on a whole wing of the house. She has a full bathroom, large and easy access. She has a very large master suite bedroom with an entire wall nothing but glass that looks out on views of the mountains and a landscaped backyard with a pool, waterfall, and an outdoor fireplace called a kiva. She has a sitting room that is very large and gives her space for a televsion area, a large desk area, and a small area to do meditations, prayers, or just sit comfortably and talk on the telephone.. (I have to dial for her, she forgot how to do it, although every once and awhile she manages.. usually trouble then.. like the time she called the dentist and gave the poor receptionist the workout of her life..) The woman is living in a paradise compared to where and how she lived prior to living with us.

She's been living with us for a little over 3 years now.

We have elder sitters, companions, and friendly neighbors who help out. And, when we've needed it, we've had visiting nurses. (I called and turned myself and her into adult protective services once when the doctor refused to agree to a visiting nurse after her surgery! Of course, they came to investigate.. with a doctor in tow, declared her not abused or neglected, but agreed with me, she needed a visiting nurse.. ah DUH! I am a strong advocate for her care.. and usually get it.)

Today, I want to kill her. I am calm and unruffled to her face, but I want to murder-al-ize her.

Okay.. MY VENT!!!

Because of her antics, we will probably have pi$$ and vinegar is for dinner tonight, and I am spitting it out!

I made swedish meatballs for dinner earlier today. It was hard to do because the baby is really sick and has been clingy for the last three days. This is the first time the baby has been this sick, and she is staying with us day and night.. as our son, a single father, is also sicker than a dog and cannot take care of her properly, or if at all.

After the meatballs were done, I set them in a rubbermaid bowl to cool off for 20 minutes before sticking them in the fridge, so all I had to do tonight was make the noodles and heat up the meatballs, and nuke some frozen vegetables for a quicky to get dinner on the table, and to have something the baby can eat, and will eat, (she loves swedish meatballs). And, the baby has been essentailly eating nothing since she's been sick.. and I have had to coddle her to get her to take fluids and food. So, this was an important sort of meal to make.

Just after they were done and cooling, I went to get into the bathtub with the baby to get her a quick rinse off and refresh her little body from being so sweaty and feverish, and because I accidently dribbled some of her medicine down on me and her. I had granny-kins settled into her room watching her soap operas, and the house was quiet and all was well. Granny-kins had been "good" all day, and I'd given her a big lunch of macaroni and cheese, a fruit cup, and some picked carrots.. all things she loves, and she was as happy as a clam.


The old "^(!^%%#" snuck into the kitchen while we were in the tub, TEN minutes IF that! And, she threw out all the meatballs and sauce into the sink and was rinsing the bowl out when the baby and I entered back into the great room!!!!!!

The dirty pan was safe. Everything else was safe, she touched NOTHING else, except the damn meatballs. She just HAD to help me by doing the meatballs, and in her demented mind, I guess throwing them out was HELPING!!! ARGH!!!

I looked at her and said, while the water was trickling as slowly as she moves, which is so slow you feel like you could blow your brains out sometimes.. "what are you doing??", and she said, "I am getting rid of these for you. Why, what you want me to do?"

Okay.. I wanted to say, "Hold your breath until you pass out and I can pretend you're not in my life right now"..

Instead, I said, "Well, that isn't what I would have liked for you to do, but we'll just figure out something else for dinner now. Why don't you go sit down and let me finish this for you".

She of course fought with me. She was into her defiant beligerant mode.

The baby was clinging to my chest and neck, and the poor little thing was so sick.. and granny-kins was such a pain.. AGAIN.

My husband walked into the house about five minutes into this situation, and was able to quickly assess what was going on. We are accustomed to the antics of defiance my MIL will throw when she gets into a mood.

Her took the baby from me, told his mother to go to her room and watch television.. (she'd NEVER do that for me.. my husband is the Crown Prince of his mother's world, the only son of an immigrant woman from Northern Italy.. and I am just the lowly expendible trash also known as the daughter-in-law. I am just a woman, and I am supposed to be abused and ruled with an iron fist by my MIL.. it is her culture). So, she minded my husband and has been back there ever since and probably won't come out of her room until he goes and gets her.

We are getting closer and closer to making a decision to stick her into a nursing home.

THe sad part is that she is lucid of her surroundings almost 90% of the time, and fights the thought of going into a nursing home. It would be extremely difficult. And, we couldn't afford the 5 to 6 grand a month for her either. And, we just had her to the doctor again.. she goes all the time between the geriactric doctor, the dementia doctor, the dentists, and the other doctors and granny-kins type needs.. anyway, we asked about referrals for a home and the doctor said she won't qualify under the medicare rules!! She is too lucid and not far enough gone yet according to their TESTS! The doctor agreed with us that she is an extreme case and she sympathized with us, and said that the rules should be re-examined in regards to my MIL's diagnosis and exhibition of her diseases, but they don't do that. It is one for all, and all for one type rules.

We've had the Alzheimer's Assn. case manager out to our home a number of times to review the situation and help us cope and give us strategies to deal with her. The case manager agreed with the dementia doctor and the rest.. she is a tough nut and a highly unusual case. And the case worker was essentially clueless other than to refer us to more companions and elder sitters to sit with her while we are home, oh swell.

Man, just writing this made me feel better.

Okay.. it is now 5:22pm and I have to go figure out what the sam he(( to make for dinner.

My husband has the baby in bed with him and the two are napping. Granny-kins is in her rooms and going through her papers AGAIN.. (these are papers she's had for years and years. She forgets they are old papers and sits down to write out check and pay her bills.. and, there are NO bills, we cover everything for her. But, she fusses becasue they didn't send her an envelope and she has to spend hours addressing envelopes and writing checks. And, the addresses on the envelopes are a joke, and the checks could never be cashed.. she can't remember how to fill out a check, so she just scribbles usually.) And, her son sent her to her room, so she feels that compelling need to obey the Crown Prince of her motherdom.

Fish is quick. The baby likes fish and can eat it easily. I have some cod and some halibut.

I will make some fish.. and hopefully, feel better later on this evening.

Thanks for letting me VENT VENT VENT!!

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can you safely lock her in her 'suite' when you cannot be available? Carolyn

    Bookmark   November 30, 2005 at 8:00PM
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We tried that a few times, and it was a catastrophe. She is aware she is locked in, and she goes into an insanity act.

I cajole her. I play her. I treat her like a two year old who has to be good now. THAT usually works.

We just had dinner, it was the hailbut, french fries, corn, and green beans. The baby ate more than she's eaten for the last three days of being sick, and she took a few ounces of juice too.

My MIL has NO memory at all of throwing out the meatballs. None.. nada, neit, nothing. My husband made a comment about it at dinner, he said, "Mom, you really need to ask Susan before you throw something out". She said she never throws anything out, but that I do all the time. She went on and on about how I throw out good bread.

We dropped the subject. The bottom line is that the baby is fed and doing better, the meatballs are gone, and so is my MIL's ability to know what she did, and even if she did remember, in her twisted logic, she'd have a reason that made sense to her, even if it was ridiculus to us.

Now, I have to go clean the kitchen before my husband can't hold her back any longer. She isn't allowed to clean the kitchen because she tries to scrub the pattern off the dishes, she will go on and on endlessly trying to sparkle the silverware, which she has essentially ruined scrubbing them to a dull finish of yuck. She scrubs the glasses the same way, making them all dull and milky looking.

I know most of the posters here consider their charges their "LO" or loved ones.

My MIL is not my LO. She is not my Loved One. She never was. She never will be. I love her, but not "love" love her. I care for her, and manage to do an excellent job, even when she pushes me a step over the line.

It's funny, Dear Abby recently wrote in her column that even parents of toddlers and young children can be pushed so far that they feel a flare-up of anger and sometimes, for a little while, they can even hate their own kids. I guess I never felt the hate part of that, but I do remember denting a revere ware pan once because the kids were driving me into a frenzy once! Stunned me more than anyone. I just slammed the pan down on the burner.. and whoa! A dent!

So, if our own children, or even a husband, can drive us into a feeling of ARGH!!!! I guess it is reasonable to me anyways, that my MIL can drive me into feelings like that.

However, I know that it is politically incorrect on many of the caregiver sites to say that you don't love your "LO" , and that you do not give your entire devotion and life up for their care.

Dinner is done. And, the anger and frustration are leaving me.

Vent Over.

Tomorrow is another day.

    Bookmark   November 30, 2005 at 9:08PM
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What a tough day, you are a hero, you know. And a good vent can be very satisfying.

What about putting her in an Adult Day Care program every day. They are very good, it will give her a chance to get out of the house and do things, and give you the break you need. They are well worth it. Your mother sounds bored - she's needs to "keep busy" and she finds whatever catches her eye, and does it, even if it makes no sense to you.

Of course she doesn't want to go to a nursing home, not too many of us wake up and decide today is the day to move to a nursing home. But it looks like it's time to get her out of your home. It's not doing your or your granddaughter any good having her there with this much chaos and anger and frustration. The tables have turned, now you and your husband have to make that decision, and see that it gets done. But..... once there, she'll be fine, she'll be happier there than at home with you. Good nursing homes have lots of activities and lots of supervision, and good care. And your weekly visits with her will be a treat, not an ordeal.

Medicare won't pay for a nursing home unless she needs it for sub-acute rehab - and then only for a short time. If she has no money, Medicaid will pay for her care. If she has money, that would go toward nursing home expenses, she must get some money every month - Social Security/pension, etc. Why do you think you have to pay the entire cost?

Your energy should go towards taking care of yourself, your husband and your dear granddaughter - his mother should not be at the top of the list. You know you are not going to hurt her, or your grandchild. That leaves you, and your marriage. And if your husband leaves, you know, beyond a shadow of a doubt, that he'll leave his mom with you. LOL

You are doing an amazing job, and have every right to be angry with her, even if she doesn't know what she did. It's still a waste of your time, money and the food you prepared.

My mother had Alzheimers, for 15 years, and my dad took care of her for most of that time, and she became very difficult. After 10 years, we sat down with dad and said that it was time to move to a retirement community, he fought us for almost a year. After they moved, he loved it, said it was the best thing he ever did. After a few years, we insisted mom go to adult day care, and he fought that, but she loved it, and he could finally do some things for himself. The next year it was clear that it was time for her to move to the nursing home in their retirement community. She had become violent and was hitting him, and didn't sleep at night. She got out of their apartment a few times, even with an alarm. Even so, he fought that too, but the move went well, she was much happier and so was he. She died 9 months later.

My dad lived for 6 more years. For 4 1/2 years, he remained in his own apartment, with some help after he had a stroke. Eventually he moved to the assisted living facility, and 3 months later, to the nursing home in the retirement community. He died there a year later. Both of my parents had excellent care, they loved the staff, and we were confident we'd made the right decisions.

Take a deep breath, have a good cry, and hug that wonderful granddaughter and dear husband.

    Bookmark   November 30, 2005 at 9:19PM
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Anyone who has been a caregiver to someone with dementia certainly understands what you are going through. I cared for my mom in my home for one year - she has Alzheimer's - and I nearly had a nervous breakdown. I had every intention of caring for mom until she reached end stage...at least the first six months she was with me. After the first three months, I became so depressed I went into therapy. It took another 3 months of therapy for me to understand that whether mom lived with me or in a nursing home would not be dependent on what stage she was in; rather, it would be when I would reach the end of my rope. One year --- that was all I could do. Now, mom's living with my sister and I see a lot of the same happening to her.
I think it's very healthy for you to come here and vent. What you are feeling, in my opinion, is not that uncommon when caring for a demented person. Most of what they do doesn't make sense and it is SO difficult to deal with. My heart goes out to you. You are truly an angel,

    Bookmark   November 30, 2005 at 11:16PM
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Oh my gosh.

My first reaction upon reading this is that you have got to do something to take care of yourself. You are teetering dangerously close to emotional collapse. You've been a heroine managing as much as you have -- and you have the patience of a saint -- but it's your turn now.

Of course, your MIL does not want to go to a nursing home. She probably doesn't want to try adult daycare, either. But momj47 is right, she'll probably love it once she gets into it. You've made a beautiful home for her, and are able to provide her with much more than many other people in similar circumstances are able to, but you can see that it will never be enough. And it can't be enough because she is a sick woman. It's not her fault or yours. It's just the way it is.

As far as the cultural aspect: yes, the son in an Italian family is often doted upon. My grandmother had 3 sons. The oldest one rarely came to see her. Twice or three times a year, max. He lived within 10 miles but there was always "excuse" for him because he lived "so far away." When he did come, they rolled out the red carpet for him, serving everything he liked, the special wine, etc. My father was the youngest son. We lived within shouting distance. He lived at home until he was married (at age 34) and my mother told me that his mother and sister sobbed at the wedding. He was expected to do everything for them and be at their beck and call and nothing was ever enough. The middle son was more or less ignored, although he and his wife faithfully visited nearly every week.

But anyhow, all that is neither here nor there with regards to your present situation. The thing is, she won't always be "90% lucid and aware of her surroundings." She isn't completely lucid now, with the things that she does. She has multiple diagnoses that are very serious in nature.

I would suggest that you make an appointment to talk to the social worker in a couple of nursing homes. They've heard it all before, and can give you an objective opinion. You can tour the homes and see what they are like. It is better to do this when you're not under the gun to make a decision.

Medicare does not pay for nursing home coverage, which is considered custodial care. They pay only for skilled nursing care, which is usually short-term rehab.

Medicaid, on the other hand, pays for nursing home coverage once you spend down her assets to under $2K (at least that was how it was last year, when my mother was in a nursing home). Why do you feel you need to pay for this?

Here is a link that might be useful: Medicaid information

    Bookmark   December 1, 2005 at 11:10AM
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Venting is one of the main purposes of this forum, I think. Even though I dont post all that often, just reading what everyone else is going through is enormously helpful. We are not alone! Unfortunately, I didnÂt discover this forum until after my mother had died and weÂd just moved my father (with AlzheimerÂs) into an assisted living facility. ItÂs easy to find people to talk to about relationship troubles, having kids, and job-related things, but not so easy to find anyone who really gets being a caregiver. IÂm still a couple of years from forty, and wasnÂt expecting to deal with terminally ill parents for another decade or so. ThereÂs just nothing quite like changing the babyÂs diaper, changing your momÂs diaper, and changing another baby diaper without pause. If I vent to my peers about such things, they look horrified and change the subject.

ItÂs OK to care for someone whoÂs not your LO. ThereÂs nothing politically incorrect about it. This isnÂt a judging type of forum, and caregiving is not a competition.

Susan: you are a saint! Having my MIL move in would be nightmarish for me. Luckily, the in-laws are in good health! It seems that most full-time caregivers are caring for their own parents, spouses or children. But caring for your MIL, especially one who was probablyÂdifficult before the dementia set in, puts you on another level entirely. Although My MIL certainly doesnÂt consider me trash, she has an overwhelming need to be alpha female in her home or her childrenÂs home. IÂm not too fond of having my kitchen rearranged. Or having my small children told that Santa only comes to GrandmaÂs house (I kid you not). WeÂre working on it, but progress is slow. The mere thought of having my MIL move in with us is enough to try to get into the witness protection program. I donÂt know how you do it, especially with your granddaughter.

Honestly, I donÂt think your MIL is ready for a nursing home. She doesnÂt need a round-the-clock nurse yet. Have you looked into an assisted living facility? TheyÂre far, far cheaper. My fatherÂs AlzheimerÂs is about stage 3, and this is perfect for him right now. Adult daycares are another good option. Go ahead and start checking out some places your MIL could live. Making that decision now will make things much easier when the time comes.

Hang in there!

    Bookmark   December 1, 2005 at 11:19AM
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this won't be of any comfort to you, but looking at all the things wrong with her, I doubt that she will go on at this level for much longer. Then there probably be a big drop in ability requiring more care than you may be able to give. So, take it one day at a time and MAKE PLANS! Check with the Nursing Homes and get her name on a waiting list for the one most suitable. She won't be eligible for Medicare, except for doctor visits, etc. Start checking out applying for Medicaid.

    Bookmark   December 1, 2005 at 12:54PM
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Agree with PeaBee4....make plans. Your primary obligation is to your own family and to yourself. Care-giving concerns cannot be allowed to threaten. Tough situation but sounds like decision time to me.

    Bookmark   December 2, 2005 at 12:20PM
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