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Pennwoman  (Level: 152.3 - Posts: 2478)
Tue, 10th Nov '09 9:00 PM


Seriously, I am at my wits end. I, logically, know all the aspects of this, but frankly, I am sitting here in tears, and am honestly heart broken.
My mother is 76, and has a form of MS -- mild... such as it is. She was diagnosised at age 49, and has had a slow progression ever since. Until recently, she has been wheelchair bound, but completely able to get in and out of bed, on/off toliet. She over that past year, has had days, when she can't get back in bed when tired, or had trouble getting out of the shower but for the most part is very indepedent... she wouldn't eat my cooking, but was able to make her own food. She was fiercely independent, and veiwed my living with her, as a threat. That being said, I am, as always, the one that drives her, gets her in and out of van, etc etc etc. I clean, I shop, I do whatever is needed, in the most unobtrusive way possible, I have siblings but only my brother lives close, and is somewhat a help. My sister, lives in Kentucky, and makes my mother feel better by buying her things... which is fine, she is far away, can afford it and it makes her feel better. When, I first moved in here, 2 years ago, my mother and I would fight constantly. Rather, she would scream ( and I mean, exactly that) at me, most days or not speak to me, for days at a time... of course, until she needed me, to do something. The last year, had improved greatly, we were able to at least cohabit, somewhat peaceably. Since my son, has been home from the Air Force, things have been great. She spoke to me all the time, was up beat etc.
The past week, she took a sudden turn for the worse, health wise.... completley unable, to get out of bed at all, suddenly needing a bed pan, required me to bring her food etc etc etc. It's not been pretty, but I am a nurse, it's what I do. She is adamant, about not going to the hospital, and she and I had a long talk one day last week, about this subject and I told her I would do whatever I can to keep her home. I, have been up, at all hours -- making popcorn at 3:30 am, because she was hungry.and well the other needs she had. Today, she was slightly better and able to sit in her chair, and actually leave her room. I had made arrangements for a new hospital bed and trapeze, when she came out, and went to use the phone. I helped her dial my sister..... and she then, told my sister, that I have been emptying her bank account.
I am devastated. I, of course, have done, nothing of the kind. I know, its her illness, I know, she is grasping at any form of control over her life. What I need is, advice on how to deal with it. I, have little external contact lately, and I know, that talking about it,is the only way to feel better... so help!

Tresgatos  (Level: 201.7 - Posts: 4146)
Tue, 10th Nov '09 9:55 PM

Martina, you're a wonderful person. Sending you a PM.

-- Geri

Bobolicios  (Level: 116.8 - Posts: 1745)
Tue, 10th Nov '09 10:16 PM

You need to take care of you some girl friend. I know you well, and you have issues around you mother. You are doing all you can maybe it is time to take care of yourself as well. Might I also suggest a social worker who specializes with geriatric patients who can maybe counsel your mom and try to settle the situation. I also think you should sit your mom down and maybe with your brother and son, the more family the better. Have an intervention of sorts, let her know that you are willing to be caretaker but she has to have some respect and trust. She has to trust your decisions and allow you to take care of her because it is obvious she can't take care of herself. She is lucky to have a skilled nurse as a daughter who is willing to take on the responsiblity and the least she can do is to show some gratitude. I am sure it is difficult to be cared for and perhaps her mind is being affected if she is that paranoid and delusional. This is just for starters and I will send more messages privately. Don't let this affect you in a negative way as you have shown more patience than anyone I know, including myself. Love Steph

Jank0614  (Level: 67.1 - Posts: 4597)
Tue, 10th Nov '09 10:22 PM

Martina - that took real courage to write and share your situation with us. Your heart is hurting so much and you've given and given.

I'm guessing you talked with your sister and she knows the truth.

Man, nobody knows what to do in that kind of situation, or can even imagine it until we're in it.

My dad took care of my mom through all stages of her Alzheimer's. In the worst year, my dad, who was the sweetest, strongest man I've ever known, talked to me once and literally fell to pieces crying, telling me there are times he just didn't think he could take it any more. The things my mother did to my dad and said about him which were created in her very ill mind were just HORRIBLE. I could never have lived with her under those circumstances, as my dad did. My parents had a pact with each other that neither would ever put the other in a nursing home, and my dad kept that pact till 10 days before my mother died, and even then just because there was no way he could care for her further, and her doctor refused to let her live at home any more (he was 86). After she died, he only lived another 9 months. I think it just about killed him taking care of her.

Sweetie, you're an amazing woman and (IMO) there are no right or wrong answers. Whichever way you go would be a good decision if you're comfortable with it.

Is there something in your heart you feel would be the best thing, but you're just fighting what you believe is right? Are you so exhausted you're just so beyond knowing what would be best for her or you, or you just don't trust yourself? Are you afraid if you make a decision to put her in a home, you'll regret it?

Is there any kind of support group in your area with people who are going through or who have already gone through what you're going through who could give you advice and the result of their experiences either way? I think you need real world support from others - to sit with you, cry with you, hug you, hold you up.

Which leads to another question. Can you get someone to help you so you do not have the sole weight of the situation on your shoulders? Maybe if you had lots of opportunities to get away from the situation, consistent breaks and rest, you would feel refreshed and strengthened to make decisions with which you feel comfortable, in whichever direction you decide.

Other than that, I just say I really admire you and hurt for you! (If I rambled, I apologize!) I guess the only real help I can offer is to pray for you daily, now with specificity because you trusted us enough to tell us. You are now also in my 3 hours a day trip and I'll be reaching out to you through the Father every time I think of you.

Pepperdoc  (Level: 152.5 - Posts: 4286)
Tue, 10th Nov '09 10:36 PM


Uturntama  (Level: 51.0 - Posts: 179)
Wed, 11th Nov '09 12:00 AM

You are an angel and don't forget it. My mother suffers from Parkinsons....end stages. Can no longer do anything for herself. She once was a vibrant, independent woman and now depends on my father for everything. She worked until 80 years old. She is now 87....drools, wears depends, has a catheter, cannot even wipe herself after going to the bathroom, no bathing unless I or my sister gives it to her and suffers from dementia. She is now dependent on the man who she has had a very rocky marriage with. I think your mom is upset that her independence has been taken away. I try to put myself in my mothers place and then I can cope better with the situations that arise. One night....(she does not sleep by herself)....she woke up and thought she was baking cookies and said she had to get up and get them out of the oven...this was about 2 a.m. Then 2;30 comes along and she tells me she's getting up....she wants a cookie to eat. Then 3 a.m. and she tells me to go check those cookies. We stayed up all night long talking about non existent cookies. In the morning she says I think I'll have one of those cookies. I finally just baked her some.'s tough as I've had more than one night of hardly any sleep but I cherish her and even her mixed up mind. I know she had more than one night of no sleep when I was a baby or younger. One day I will not have her. Remember......this too shall is only for a season. I do understand your frustrations. Bless you!

Bushyfox  (Level: 174.4 - Posts: 2403)
Wed, 11th Nov '09 12:17 AM

Sorry, this is all outside my experience, but I can offer you a hug of support, and a lot of caring.

However, it might be an idea for you to seek out support groups in your local area. Surely others have gone thru what you are enduring?
Others may be able to make useful suggestions, and possibly have a care-roster that may give you a couple of hours just to spend as you wish.

Perhaps your doctor, local hospital or clinic may know of a support group? This is way too much for you to handle by yourself.

All my best wishes....

Summertime  (Level: 108.9 - Posts: 1122)
Wed, 11th Nov '09 3:26 AM

What you've described Martina is a "living hell". No doubt, you are a strong woman; certainly many others would have crumbled under the daily mental, emotional and physical stresses you are enduring.

I will be sending a PM your way Martina. Deedee

Collioure  (Level: 102.5 - Posts: 9952)
Wed, 11th Nov '09 6:49 AM

I have no idea what to do, but fortunately others here do.

Sending lots of moral support so that you find a solution that allows you to live a life too.

Caramel1  (Level: 126.0 - Posts: 21557)
Wed, 11th Nov '09 7:02 AM

Sending you my supoport. Martina- Linda

Goddess28  (Level: 92.6 - Posts: 5236)
Wed, 11th Nov '09 7:28 AM

Does she have any kind of caregiver that comes to her? If she won't go to the hospital, will her doctor come to her? Would she listen to them if they did?

I am so sorry to hear of your troubles Martina, my thoughts are with you.

Pennwoman  (Level: 152.3 - Posts: 2478)
Wed, 11th Nov '09 9:35 AM

You are all so wonderful to be so supportive. You cannot begin to imagine, how much I appreciate this... but then I knew I could count on you, thank you, so very much. I am just overwhelmed with appreciation for the thoughts, and emails.
My mother, would rather die, than go to a nursing home, and I understand this, and being a nurse, I am capable of caring for her.... Unfortunately, she also, does not like strangers in her house.... I am pretty sure, that it is related to, if other saw how, ill she is, they would force her into a home... but now that I am here, with her, its not an issue.... when my dad was very ill, with cancer, we struggled with my mother, over hospice, because she didnt want "those people" in her house... Hospice is amazing btw, they bent over backward to work around my mother, but still care for my dad. My mother has ALWAYS been a difficult woman, and I should know, by now her behavior.
You, will never know, how much you have healed me, with all this support. Thank you, does not seem big enough words.

Alvandy  (Level: 225.6 - Posts: 7527)
Wed, 11th Nov '09 12:23 PM

Hope it goes well over the next few months. You are very strong and while her condition is extremely difficult to handle and emotionally stressful for you, you will still be providing the care that she will needs.
That's all you can really take responsibility for.

M48ortal  (Level: 248.3 - Posts: 3734)
Wed, 11th Nov '09 3:40 PM

My advice would be worthless here. Instead, I offer my prayers and best wishes, not only for you but for your mother. Even if she does not acknowledge it, she is also going thru her personal Hell. Hope someone is able to give you perfect advice. My thoughts are with you.

Jeannette  (Level: 109.5 - Posts: 1736)
Wed, 11th Nov '09 4:09 PM

you just hold on to the knowledge that you are doing the best for your mother ,with this illness the ones who look after them are allways treated as if they are doing wrong .keep your chin up a big hug my prayers are with you xxx

F5laur  (Level: 31.1 - Posts: 823)
Wed, 11th Nov '09 4:31 PM

If your sister makes your mom happier by calling her, sending her things, and most importantly talking with her, might it be a suggestion that your mom move to your sister's? It would seem that by now, after two years of doing everything, plus putting up with the unappreciation toward you, maybe it's time for a change. Maybe it is Martina's turn to have free time and a much more positive atmosphere.
You are a wonderful person, Martina and you deserve to be happy, now.
This is just an idea, as I meant no intention of "butting in where my nose doesn't belong"
I wish you and your mom the best.

Asor  (Level: 153.3 - Posts: 589)
Wed, 11th Nov '09 5:32 PM

At the very least, your sister needs to drop whatever she's doing and come and stay with you for a week. Your mother needs to know that she can't play games by attempting to turn your sister (and lord only knows who else) against you. Your sister needs to be 100% clear with your mother that she believes in you and supports you and is grateful to you for all you are doing for your mother. It can be tempting for the "outside" sister to play along with the parent to be the "favorite" (no matter what the age!). Your sister owes you a tremendous amount and needs to pay it back NOW by making it clear she has your back no matter what. She needs to make it clear to your mother that if she makes the living arrangement untenable for you, the two of you will have no choice but to put your mother in some sort of care facility. If she's unwilling to do that, I second the motion to drop your mom off at your sister's for a (long) spell.

I hope that doesn't sound cruel. I just think you're playing with your own health (mental and physical) by being the dutiful daughter at the expense of your own well-being. You are obviously incredibly loving and patient and kind. Don't let those things be used to hurt you.

Bbear  (Level: 159.3 - Posts: 2301)
Wed, 11th Nov '09 6:54 PM

Martina - as a long-term hospice and home health nurse, it is amazing how families survive it all.

Look into community resources -- in Louisiana there is a state program called "the waiver", where folks can have a state-paid sitter up to 50 hours a week. However, it is a Medicaid program and therefore the people who are in it have to be poor. I don't know what your mom's financial situation is, but if she has any money forget about it.

What about daytime adult day care programs? Some are pretty inexpensive and some have pick-up services. Gives the caregiver a break. about a trip to sis's house for a few weeks? Or...have sis come to your house and you come to mine and visit New Orleans for a week?????

Pennwoman  (Level: 152.3 - Posts: 2478)
Wed, 11th Nov '09 9:44 PM

Again, thanks so much to you all!
I had dinner with my best friend, and her mother in law, just informed her, that she is the reason, that her entire family avoids contact with her.... so I guess, it's just sometimes the eldery's only way to vent their frustrations.....
I am taking to heart several suggestions I have gotten, you will never know how much all this means to me.
And Bbear, that knock on your door, at an odd hour, just may be me!

Jank0614  (Level: 67.1 - Posts: 4597)
Wed, 11th Nov '09 9:51 PM

And you know, your story has made me think about my own future. So many of us have a future waiting for us that may put us in your mother's shoes in regards to an illness we'll have to deal with. It made me add to my prayers today, asking God to allow me to grow through the end of my life not being a burden or pain to my son - or anyone.

Uturntama  (Level: 51.0 - Posts: 179)
Thu, 12th Nov '09 12:05 AM

I have prayed that very prayer also as I have never been married therefore no kids either. God will provide. mother is on her way to my sisters house as my dad needs a break. being a caregiver is such a hard, at time stressful job. My mother does not want those people in either. But then again....the nurse had two catheters hanging out her and could not figure out what was wrong. are a godsend to your mother and I pray she will realize this and treat you kindly.. Take care and you are in my thoughts and prayers........Tama

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