What's in Store - Alzheimer's Disease & Dementia Message Board

caringsister54 · 10-27-2008, 04:07 PM

10-12 years ago, Mom started to act be-fuddled. Mom started to lose ability to string whole sentences together. Able to get thought across but not in conversational manner. Later on, lost ability to talk completely with the exception of making sounds. Sister (57) becanme a companion to Mom which in turn became full-time caregiver as Mom's health rapidly deteriorated. A few months ago, Mom use to make 'moan sounds' when breathing although she didn't know she was doing it. Now moan sounds are gone but in place of it, all she does is say "la la la la" which in the beginning was how she called my sister.

Mom now has become combative. She strikes out at sister, she's bite her finger when she was trying to force the medicine in her mouth, she's slapped and broke my sister's glasses. She's hit my sister numerous times. my sister does nothing but yell at Mom about different things throughout the day, bedore Mom was able to feed herself, now because she's not eating much, my sister is spoon feeding her at times. Mom also started dropping weight like crazy because I feel that now her brain maybe isn't registering hunger or thurst and she doesn't know she's chewing. Food time has become a battle.

Where am I in all this, you ask??? Well, I have my own story here. I am no help. I work full-time because I am supporting myself and my two kids. I am a recent widow (05) and very, very depressed. I can't sit up all night to be there for Mom so Sister could sleep because I need to work. A good seed (my sister) /bad seed (me) lifestyle. With loving husband, I did do as much as I could, he wasn't as incapacitated as Mom. I took care of my husband's needs all during his 3 year battle with Progressive Kidney Failure. He had a massive heart attack right in my living room just 2 hours after he was released from a hospital! right in front of my eyes and I haven't been the same since.

Time hasn't healed all wounds so to speak. I'm not dealing well with the drastic changes in my life as a result of his death, both financial and emotional. I'm also a believer that I didn't give birth to my two kids to be there and take care of my Mom and Sister. I don't want my son going into a bathroom with my Mother and wiping her.

While many others wrote being a distance from ill parents, I can't say that. I live on the other side of a very thin wall! so I hear everything.

I tell my sister to put my mother in a nursing home so she (Sister) could have some sort of life. She's really needs to get a job and work. She's been out of work and her social security is going to suffer because of it. Why isn't there any government programs (state or federal) for caregivers like my sister and others I read here???? Don't know what makes her feel that she needs to do this, to sacrifice her life away like this. Everytime I try to get her to see another aspect in Mom's decline, she just excuses it away.

Doctors have told her to let Mom eat anything, Sister monitors every morsel and grain. Senior center said that Mom needs sedation so she's not so combative and aggitative, her answer was to stop bringing her there. In regards to nursing homes, sister feels that Mom will be full of bed sores, no one would feed her and do right by her. Yet sister has started having problems with frustration.

I don't want to see her getting sick. Where she wasn't the one to have medical issues, her age is catching up, she is now having some medical things to deal with. Its hard not being able to be much help.

I told her to use the money to get a nurse in for a few hours and get out in the sunshine and fresh air but my sister screams that its ridiculous to do this because she has no where to go. She's not the type to go to movies, walks in a park, walk a mall, bench sit and read and/or go to a restaurant by herself.

What is ahead for my sister? What's the next failure? I need to know is coming?

Martha H · 10-27-2008, 04:55 PM

Your sister is wrong about nursing homes.

My Mom was in a good nursing home on Long Island, NY for 2.5 years and was happy there. I had been her full time caregiver for 5 years and when that got too difficult, as the result of a broken hip and being confined to a wheelchair, we placed her there. Her money ran out after 3 months and then she applied for Medicaid. My brother had the medical power of attorney and did all the paperwork. Medicaid accepted her, and while it was pending the NH charged her only her SS minus a small amount for spending money.

Mom and the others we got to know on frequent visits never got a bed sore. Never was neglected. Never smelled bad. Always got fed and was lovingly cared for until the end in December 07.

Your sister is not only losing out on her own social securtiy but making her own life and her Mom's life harder. Mom needs to be cared for by well rested people on 8 hour shifts, so no one loses their temper. Being yelled at is abuse. If she yells at Mom for 30 or 45 minutes, that is as bad as hitting her. When I got frustrated -- and I did -- I went into the farthest room in the aparmentt, cried, screamed into a pillow, and came back out smiling.

You ARE a caring person -- you took care of your husband, and no wonder you are depressed with the commotion next door. I highly suggest that you speak to your Mom's doctor. He or she may recommend a NH which will take her in, at no extra expense to you or your sister. You are not a bad sister. There is no such thing as a bad seed. You are a good daughter, looking here for help and this is the right place! Your own doctor can prescribe anti depressants for you, but the best cure will be getting your Mom into a safe, cheerful, pleasant, non screaming environment.

God bless you and good luck!

Martha

Gabriel · 10-27-2008, 07:02 PM

Welcome to the board Caring... and yes you are caring. Just the fact that you are here says a lot. Your sister is only in for more and more frustration trying to care of your Mom alone 24/7. If she is yelling at your Mom for extended periods of time... that is abuse.

HN are not the horror stories of the past. Not only was my grandmother in one but I worked in one myself. In the 7 years I was there we NEVER had a bedsore except the ones that came in the facility with the patient. We did heal many. Each patient was fed to their ability to eat and process food. Your sister's frustration level is high and she is exhausted. That can not compare to three shifts of professional staff with a large support staff to help them. A good NH is a not a curse but a blessing.

The community center is right. There are meds that your Mom can take that will calm her down and not make a zombie out of her. Your sister might benefit from some antianxiety meds at the moment as well. She could definitely benefit from some time off.

If your Mom is refusing to eat it may be that she is not feeling hunger or thirst or it might be that she has forgotten how to chew or swallow. Making meal time a battle is only making it worse. Your sister's anxiety will color how your Mom reacts. Giving her finger foods or chunks of foods that she can handle by herself is an option. If she can't chew or swallow them appropriately she should be getting thickened liquids or puree's supplemented with a nutritional supplement like ensure. At some point she will forget how to process food. Force feeding her will do no good because her body can't use what it received. Towards the end, when she has forgotten how to process the food she eats and even before she will drop weight dramatically. There is nothing your sister can do about that. At that point you risk aspirative pheumonia from inhailing food particles into the lungs when force fed.

I would suggest you go with your Mom and Sister to the next doctor's appointment and bring up your concerns. Let the doctor explain this to her with you there. Ask for a written report. Then your sister will have more difficulty negating what he says.

If nothing else works and she continues to take her frustrations out on your Mom you can call your state Social Services for an investigation. That is a dramatic last resort and it may be the end of your frienship with your sister but it will get your Mom the care she will need.

As for yourself..... get the help you need as well. Talk to a doctor and if you don't want medication at least find yourself a good support group. I have a close friend that lost her husband. Even thought she resisted at first, she loves her support group now. They have done for her what this board has done for so many of us. You are working, caring for two kids, and worried about your Mom and Sister. You have a lot on your plate. Give yourself a little credit

You are doing amazing and doing good...

Love, deb

caringsister54 · 10-27-2008, 08:00 PM

Thank you all for replying and letting me know that I'm not nuts at this point.

My sister is a kind soul. She is a good daughter if a little misguided over this entire Mom thing. I just feel so bad that her life has been so isolated all along. Things just never clicked for her in life as with others for some reason.

I just told her about the possibility that what she eats would go into the lungs and not the stomach and that took her back some. She wasn't aware of it. She said Mom had a better day today. She asked her if she wanted to go to the center and she implied that my mother said "i'll try". Not sure it was exactly that clear but miracles do happen some days. So she put her in the car, travelled the same way and everything seemed okay until she pulled into the parking lot then my mother started to frail away at my sister. My sister just brought her home.

I think my kids and I telling her how much she yells etc. made a difference today. While writing on here, I was dealling with several phone calls and a lot was said. My sister truly can't bring herself to contemplate my mother in a nursing home.

thanks again. I'll keep you posted. She really is a blessing. It would be so much worse if I was on my own having to deal with this.

Gabriel · 10-28-2008, 01:04 AM

One thing your sister needs to understand is that most of the time your Mom doesn't understand what is going on around her. Even if by some miracle she does understand for a moment, she will not remember it. If your sister ask your Mom to go to the center she still didn't understand where that was or what they were going to do. She might have understood "GO". If your Mom got upset when your sister stopped the car she might have been upset that she was not moving rather than where she was. Your Mom reacts to her surroundings in a very different way than you or your sister does. She is very much in the moment without a past or future.

I am glad that you have made some progress and things seem better today. It is good that you talked to your sister. You do need to keep working on her. Sometimes people get stuck in what they are doing and they don't know how to change. Rather than your Mom going to the nursing home.... your sister should go see what it is about. She is the one that has to be ready to move your Mom because your Mom can't make that decision for herself. When the time comes, you and your sister will make it happen happen and your Mom will adjust. When I was struggling with moving my parents to AL, some wise soul here on the board told me..... "It is when the caregiver is ready that the loved one is moved!" I am sure you and your sister will find a solution....

Love, deb