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Old 01-25-2010, 07:38 AM   #1
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My Mom..Dementia

I'm new to this, please bear with me. My mom is in what seems to be advanced dementia (according to the posts) There wasn't much time to prepare for this as it seemed to come on quite rapidly. She caught cold a few months back and her doctor told me she had 24 to 48 hours to live but if by some miracle she pulled through then he would give her 6 mos. He then called Hospice. There have been some touch and go times since then. I am full time caregiver with a disability of my own and it sure gets tough. The hospice nurse comes once a week and the aide comes Mon-Fri with no weekend help. This is due to the fact that the nurse decided mom was doing quite well and is now saying they may pull out of here completely. It's been 90 days since hospice stepped in. The nurse sees my mom for about 20 minutes once a week. I am so worried that I will not be able to afford the medicines ( although few) that she takes not to mention the chuck pads and diapers. I have to give her 2 breathing treatments a day with Albuteral. Although she hasn't smoked in over 30 yrs she has emphysema which produces thick mucus build up in her chest. I must run to her each time she coughs it up and pull it out of her mouth. My day usually begins quite early, today it began at 4 am with her hollering for me. This morning I am "MOM". Waking to the loud screams of MOM through the baby monitor placed at my ear are without a doubt nerve shattering. Nothing she says makes any sense and I would give anything to hear just one normal sentence spoken. Mom seems to have rediscovered her appetite which a month ago was nearly non existent. She is now forgetting how to swallow and she can't weigh 80 pounds yet screams for food and insists she hasn't eaten. For breakfast she will devour 2 pkgs of instant grits or 2 instant oatmeal along with a bottle of juice ( the juice is extremely stressful as she downs it non stop til it chokes her so I have to be standing there to stop her). I make mostly home made soups to put in the blender for lunches and dinner but occasionally will blend together hot dogs and beans or a medley of steamed veggies to try to get what she needs into her. She drinks at least 1 ensure a day as well. I have a portable toilet beside her bed which I do lift her to but that's beginning to stop. As I lifted her last night she let it go all over me. She can no longer move her bowels on her own, I give her a stool softening liquid daily which doesn't work and she must be given a suppository or enema once a week to get her belly emptied. A new issue popped up today... She is coughing up large amounts of phlegm but by the time I get to her she swallows it. She doesn't seem to know how to spit anymore. I will continue to care for this wonderful woman the best way I can with or without hospice. I owe her this but sometimes I sure feel like I'm going to break

Last edited by oceanwinds; 01-25-2010 at 09:46 AM.

 
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Old 01-25-2010, 07:54 AM   #2
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Re: My Mom..Dementia

I very earnestly suggest that you move your Mom to a hospital, stating that you cannot care for her at home and she is not eating enough to keep her wieght within normal range. Then once they have examnied her, THEY will have her transferrred to a nursing home where she will be cared for by well rested shifts of loving nurses and aides. You cannot do this. You said you yourself have a handicap. Let her be in a safe lplace for whatever time she may have left. Even if she recovers from the emphysema, the dementia is reason enough to be in a NH. Do not worry about the cost; people whose own money (hers, not yours) runs out during the course of care as my Mom's did, can apply for Medicaid and cannot be kicked out of the NH while Medicaid is pending.

Both you and your Mom would be better off if she were in a caring facility. Please consider it.

Love,
Martha

 
Old 01-25-2010, 09:03 AM   #3
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Re: My Mom..Dementia

I hope you will listen to what Martha is telling you. You need help. This is more than one healthy person can handle. My mom isn't as far along as yours is but she is now in an assisted living facility. I can't imagine doing it 24/7. It doesn't mean I don't love my mom with all my heart but that her care is what is most important and I know they can do this so much better than I can.
I also found that giving over her care to others trained to do this enables my time with my mom to be so much more special.

Love, Meg

 
Old 01-25-2010, 09:28 AM   #4
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Re: My Mom..Dementia

I suggest you carefully read my post again. I have a disability.. not a handicap that impairs me. I care for her better than any other place would. My mother will remain with me until her last breath hence the fact I have hospice. The difference is she wont be hooked up to machines or be alone at any given time. Her weight has decreased due to the fact she is dying.. slowly the body shuts down.. soon she won't be able to eat or swallow so it has been explained to me. Hospice helps to assist in the comfort of this process. I was hoping to connect with others that are doing this themselves.. it's good to vent and know you're not alone.

 
Old 01-25-2010, 09:38 AM   #5
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Re: My Mom..Dementia

Quote:
Originally Posted by oceanwinds View Post
it's good to vent and know you're not alone.
Hi oceanwinds and welcome to the boards, this is my second post as well, so we're equally newbies around here.

What do your mom's doctors say about you keeping her at home?
I wonder because my fiancé takes cares of his mom 24/7 and I couldn't believe how her doctors kept saying it was the best thing to do. It might be the best for her, but not for him. He can't work because he has to be around her most of the time.

Now we're near bankrupcy and the doc says that yeah, it might be better she goes to a hospice... we have her incapacity certificate pending. Before that we can't do much because we can't afford an hospice. But we both are really tired and I got to think that it might not be in her best interest to remain outside an hospice. I started having health problems myself due to the stress, and I'm not the one living with her 24/7...

I admire you for the hard decision you took and for sticking to it. But please, please, listen to her docs, they are the ones who will tell you when it's time for more professional care.

See ya around,

S.

 
Old 01-25-2010, 10:33 AM   #6
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Re: My Mom..Dementia

Dearest S,
It was her doctor who recommended I keep her with me. Medicare/Medicaid pays for the hospice to come to my home and bathe her as well as check her vitals once a week. It does not come out of my pocket yet, although money is very tight as I too must be here daily. There is nothing more that can be done so it is now a waiting game. I have accepted this and trust me it's hard. She is still with me by the grace of god as I mentioned before she was originally given 24 to 48 hours to live. Her weight loss has not been drastic as she was a petite and rather frail woman since her 70s. She is now 81. The posts here have some very good info which help me. There isn't enough food in this world that will make her gain when the body is beginning to shut down. With that being said, I hope you find that with a few deep breaths and a little bit of venting (as I have done today) your energy levels will restore. This is a temporary situation S. Have your fiance' find out if the doctor can set up visiting hospice. They also provide aides to come and sit with the patient so grocery shopping etc can be done worry free. My next hurdle is to make sure hospice continues for the next 3 months at least! I honestly don't think I will have her that long but it's helpful to have them here. My thoughts are with you both..Dawn

 
Old 01-25-2010, 11:34 AM   #7
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Re: My Mom..Dementia

oceanwinds

What people suggest is only that suggestions. We have people who suggest alternative living arrangements throughout the course of the disease be it: Independent Living, Assisted Living, or Nursing Home.

We base our replied on what we get off the written page and believe me, many times people's words JUMP OFF THE PAGE and we all feel the pain.

Your choice for keeping your mother home is your choice. it was my sister's choice as well. She wasn't willing to see and realize all the problems she now has as a result of keeping that her choice for as long as she did.

She hasn't worked in 9 years, she has no medical insurance, she now has medical problems herself, she has no income coming in and jobs are now very scarce for the most part. I have no idea what will happen in the very foreseeable future with the property tax and such for the house my mother left to both of us and my sister won't think about moving.

I just may have to start eviction proceedings on her down the road so I can sell the house giving her -- her share -- so she can move into a place that is more in tuned to her lifestyle. She is all alone, lives on her side of the house while I live on my side with my kids. She said she'll die with the house and she probably will -- staying here is not my desire and I can't move without her selling it and giving me my half. She doesn't have enough to buy me out of the house and because of one deed, we can't sell just my side.

You can pat yourself on the back for the choice you are making but we all -- who have finished this walk -- knows the toll it takes on a person in either situation. Those who lost ones while at home, have problems with 'still seeing' them around the place.

Just because your Mom may be in a facility; albeit a hospital or nursing home doesn't mean that she would die alone without you there. They know when the time is near and they can call you to be there, if that is your choice.
My aunt just died under hospice care in a nursing home and her son and daughter and daughter-in-law as well as the grandchildren were all there 24hrs per day for the last 5 days of her life.

My husband died suddenly in my living room so I know the pain of knowing that the 'thought' of when it happened, is forever burned into my memory. My daughter can't even stand to be in the house for long anymore. My son was at work when he died but he was on the phone with him when he said his last few words.

I now come home from work and immediately live in my 9 x 9 bedroom now. Hardly ever sit in the living room, stopped entertaining, stopped having anyone over for dinner, etc. If I'm not out with my boyfriend eating in a restaurant, then I am eating alone in my bedroom. The memories of my Mikey is that strong and I can't move yet because this is my childhood home I'm living in.

You can come here anytime to vent but please don't blame us for seeing the suffering of someone and basically letting them know its okay to ask for help.
As your mom gets closer to deaths door, Hospice may not be there and you have to remember that. They were called when my cousin's husband was taking his last few gurgling breaths and they said that they couldn't come until 2 hrs later. They arrived after he died. The problem also is that when they die at home in NJ, they are kept in the house until a coroner comes to declare them dead -- only then are they removed. My neighbor was there in the house for 4-5 hours before they were able to get him removed to a funeral palor.

You should look at all your options. Being Handicapped (whatever handicap you may have) could be worsened by you trying to do it all. Thankfully your mother is at the sleeping all the time, limited eating stage. If she was in the sundowning, up all day and all night, period, it would definitely take a severe toll on your health.

Glad you have support. Hope it continues, but please don't blame us for seeing through your words to the pain you were in and trying to offer suggestions. A Nursing Home isn't the 'black, bleak, uncaring, unfriendly, dark, dank, buildings portrayed in movies of old. They are bright, cheery, friendly places. When my aunt was in a rehab one, she was so very happy there that she begged her kids to let her stay saying she had a wealth of company and companionship.

CaringSister54

 
Old 01-25-2010, 11:45 AM   #8
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Re: My Mom..Dementia

I did go back and carefully re read your post.
Thank you for your suggestion but let me assure you that we don't read posts un carefully on this board and then just comment on them willy nilly.
It sounded as though you were at your wit's end and desparate for help.
We have all been there! We recognize it and we can only comment on our experiences and how we handled it.

You are not the first to be offended by comments sent with only the best of intentions. On this board you take what applies to you and throw away the rest.

Only you know if you are the best person to serve your mother's needs.
I know I am not. It doesn't mean you love your mother more than me it just means I recognize what is right for our situation. I needed more help and thought you might too.

There are people here who do it on their own so I am sure you will hear from them soon.

God bless us all.

Love, Meg

 
Old 01-25-2010, 11:50 AM   #9
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Re: My Mom..Dementia

It is really tough, but it sounds like you are doing an excellent job with not much aid. Hang in there! As you lift your Mom around please be sure you use correct body mechanics. Also Lowe's or Home Depot have back braces that I would recommend you wear; they are not very expensive.

 
Old 01-25-2010, 12:23 PM   #10
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Re: My Mom..Dementia

Oh my goodness caringsister please know that I certainly didn't mean to sound the way I obviously did. I do know it's not for everyone and I do know it doesn't mean I love my mom more than the next person. I am truly sorry you are dealing with the issues you mentioned. I have heard tales of the wait one must endure when the passing occurs. Sure it worries me, only hindsight is 20 20. I responded to the first post in haste. I do give my mom full loving care and it's what I personally need to do. I don't believe all nursing homes are bleak and dark and certainly understand that that's the best for many. Mom is sun downing.. there are times when she doesn't even nap through the day and somehow continues all night long. She no longer walks and her joints are beginning to stiffen ( as what happens in final stages) A friend of mine suggested this forum..she knows what it means to me to have mom here and I must say, getting that all out this morning actually helped. I appreciate your time and in helping me see that the caring words from these posts are not a direct slam at all. Mom has only been with me a short while but she owns nothing...has nothing and I have no siblings to deal with. I too lost my dad in an instant..7 mos pregnant and went to where my memories were strongest..the house in which he died. I felt closeness there. I pray for my mom to pass quickly..it would devastate her to know how she is right now and I also pray my living room will be filled with her undying love that she has held for me all of my life. Thank you...so very much. I really do appreciate all suggestions... more than you know

 
Old 01-25-2010, 12:24 PM   #11
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Re: My Mom..Dementia

Dear ocean,

I do understand the fact that your mother was given only 24/48hrs to live. After MIL was out of surgery, through a blood transfusion she was given an infection as well. Doctor didn't understand what was going on and they were pretty sure she was leaving us for good. She didn't. Then everybody thought she was getting better, and we even thought she'd be able to go back to her daily basis independant life.
Sadly, she wasn't. Now I have a child-MIL. My fiancé babysitts her every day and I try to entertain her as much as I can.

I'm from Argentina and here, getting help is not that easy. Tomorrow we have an appointment with a lawyer because we're not getting any help at all. We're having troubles paying her medications (MANY MANY... around 15 different and expensive pills per day). I'm glad you are getting help. At first MIL got nurses, doctors coming around all the time, but 3 months after the surgery, they were all gone, saying she was clinically fine... yeah... she's better than ever... her heart is better than ever... but her mind is all gone. She's a child now.

My fiancé says the hardest part of all is that when you take care of your child, you always know it's gonna get better: in a couple of months you'll be able to sleep more hours, the child later starts talking, etc... in MIL's case, that's different. We know it's gonna get worse, worse, and worse. Before it was a weekly change. Now it's a daily one. She's getting aggressive throghout him, and what not. Thankfuly, for some reason, she doesn't mess with me.

I'm glad you're OK with your decision. My great grand father was taken care in his house until his final days, also my grandpa. But they had a great support system, a few children and many grandchildren. In my MIL's case, my fiancé is an only child and the extended family is basically unexisted... (she wasn't a really loved person..)

Anyway, hang in there, and come to vent all you want, here is full of people who understands what you're going through because they've been there too

Sol.

 
Old 01-25-2010, 12:26 PM   #12
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Re: My Mom..Dementia

I understand that now meg. Thank you so much!

 
Old 01-25-2010, 12:33 PM   #13
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Re: My Mom..Dementia

Thank you JKjones...Thank you very much!

 
Old 01-25-2010, 02:27 PM   #14
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Re: My Mom..Dementia

My first posting was in November 2004. The very first 2 answers I received suggested my Mom needs to be in assisted living or better yet a nursing home. I was MAD as a wet hen. I thought to myslef, what do they know! I LOOOOVE my Mom, I will NEVER put her 'away' in 'one of those awful places.' But I kept coming back and reading others' experiences and how they coped.

The day came when I retired from my job and moved away leaving my Mom with my brother and sister in law. I felt safe doing that since it was NOT "one of those awful places". My brother saw that I was near a nervous breakdown, insomnia, heart problems, and total nervous fatigue, so he and my dear sister in law said, after 5 years it was their turn.

Three months later Mom fell down the stairs at his home, and had to go into the hospital for surgery on her hip. Then a rehab center .. and then 'your mother is not making progress, we need to move her to the long term care unit." Mom could not walk, Mom had no control over her bladder or bowels, could barely talk. We reluctantly agreed.

Then the wonder happened. The nursing home connected to the rehab center was a cheerful happy place! The nurses were loving and caring women. They loved Mom! They took such good care of her that she was able to join in group activities and enjoy her life there for her remaining 2+ years. They even had an Elvis impersonator there a while before she died, and that was a highlight of her NH experience. She though she was at a spa. All my fears of 'those places' turned out to be silly, illogical thoughts. Everyone who has a loved one there loves their parent or spouse. It is not a sign of lack of caring. It is a way to get ALL the care the person needs, all in one excellent place.

Do not feel insulted that I and others mentioned nursing homes. We do it out of caring for YOU and your health ... plus, it is a great place for Dementia patients to live.

Love,

Martha

PS You may stll wind up doing it and be surprised, as I was! Mom died at age 99 and 3 months.

Last edited by Martha H; 01-25-2010 at 02:28 PM.

 
Old 01-25-2010, 05:03 PM   #15
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Re: My Mom..Dementia

Ocean.

Please be reassured that these wonderful ladies are truly caring and have been my rock for 2 years with their great advice and support.

We've all been where you are, or are going thru it. So, yes. We do understand.

I learned the hard way that sometimes the best we can give is to have them placed in 24/7 care facilities, where fresh caregivers come in every 8 hours to care for them. At-home caregivers don't really know how exhausted they really are. And the job does take it's toll on us. It's been 10 months since I've had to do it, and I'm still worn out - emotionally and physically.

Please take care of yourself. My best. K

 
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