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Old 02-07-2009, 12:55 AM   #1
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A newbie who is sad, feeling helpless and grateful to you all!

Hi everyone
I have been reading all the brilliant posts and have found such comfort and sensible advice many, many times.

My Mum is going into residential care on monday (10.2.09) and I just feel like I am putting my 'little girl' into a childrens home because she wees and poohs everywhere, it was the last thing I ever thought I would have to do.

I am so horribly sad and feel so helpless and I know you will understand.
I just can't cope anymore trying to see to my Mum, do my job, look after my family (I waited 25 years for my daughter and she is the one who is suffering the most).

My mum think I'm her friend rather than her daughter and there is little she remembers of the simplest of tasks - toileting memory brain cell died ages ago, along with reading cell, hygiene cell, social etiquette cell, walking cell ... dementia is just the most wicked of illnesses isn't it?

Got to go everyone - my Mum is up again.
Talk to you all soon

Sue x

 
Old 02-07-2009, 03:46 AM   #2
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Re: A newbie who is sad, feeling helpless and grateful to you all!

Welcome Sue,

Let me first say how sorry I am that you find yourself here but I'm glad you decided to post. It sounds as though you have done all you can do for your Mom in your home. Its time you think of yourself and your daughter. Give things a little while to settle down at the residential home with Mom. One day at a time. You'll find that here, with these wonderful people, the word "guilt " is not allowed. You have cared for your Mom and your tired, feeling helpless, and so sad. We all understand because we have been where you are now. I call this terrible thing that is taking my Mom "the beast". Yes, it is a wicked thing.

My Mom and I changed roles many years ago. Now I take care of her. She still knows who I am but now I'm the one who cares for her. We understand how overwhelming that can be also.

Please come back often and let us help you in anyway we can. Its good to have someone to reach out to when your under such stressl. I needed this site more than I knew. Its my lifeline to sanity. People who understand because they have been where you are is such a gift.

Good luck with the move and stay in touch.
Hugs to you and wishing you the best of luck.
Love, Chris.

 
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Old 02-07-2009, 03:57 AM   #3
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Re: A newbie who is sad, feeling helpless and grateful to you all!

Dear Sue,

Sad and helpless. Those are the two words that describe the Dementia caregiver best. Sad because you are helpless to stop this disease from takng your loved one away. Of course you are sad. Add to that afraid, worried, uncertain, self doubting, and guilt. We like to say 'no guilt allowed here' on this site, but in actuality we all suffered from it, most especially when we had to give our loved one over to someone else's care.

Yet, logic has to triumph over feelings. A facility where your mother gets around the clock care is so very superior to you alone, working and brining up a child and taking care of your mother. Yes, you certainly love her more than a stranger can, but you can still show that love every time you visit her. Meanwhile the team of workers will make sure she is fed, clean, has her medications, is comfortable, and supervised (kept safe) ... those are priceless ingredients for your peace of mind.

I am glad you found this site and it has helped you so far. Keep on coming, you are more than welcome.

Love,

Martha

Last edited by Martha H; 02-07-2009 at 03:57 AM.

 
Old 02-07-2009, 05:22 AM   #4
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Re: A newbie who is sad, feeling helpless and grateful to you all!

Oh Sue........so glad you've found your way here. Each of us who post have loved ones in various stages...I've recently lost both inlaws to this horrendous disease...and my own Mom is nearing the end after 10 years in an Alzheimer's facility.

You sound like a very loving daughter who has put aside much of her life in hopes of doing everything you could for your Mom.......and you certainly did!

It's just so hard to place our loved one...but, in many cases, this is the safest environment for them. I've witnessed how the caretakers quickly become "family", and the care of our loved ones become as if they are taking care of their own. It takes a very special person to work at any facility...horror stories of the past are exactly that...in the past.

Sue...bless your heart for caring for your Mom like you do! It sounds like she's pretty far into this disease...very challenging. Your family needs you also. With my own Mom, my daughter seemed to be the only one who could "bring her back"...even tho she was only able to visit every 2 years or so. She has not recognized me as her daughter for many, many years...but seemed to realize someone who loved her was there...and I guess that's what's important.

Hope you are able to visit often.....your posts will help others stumbling down this path. Sending positive vibes across the ocean.......Pam

 
Old 02-07-2009, 06:35 AM   #5
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Re: A newbie who is sad, feeling helpless and grateful to you all!

Glad you came out of your lurking mode Sue. Welcome to the light! I totally agree with you that placing Mom is a sad moment. I remember when we had to place Mom and Dad in Assisted Living. It is a monumental decision that none of us want to make. But there are times when it is the right decision to make and it sounds like that is the case with you. We have to give up that super woman cape, admit that we can't do it all, and do what is best for our loved ones. Three shifts of well rested caregivers and a large ancillary staff can definitely do a better job than a single tired individual. What you have done is the best for not only your Mom but for yourself as well. Your daughter needs her Mom. Your Mom would want that for your daughter.

16 months ago, when we placed Mom and Dad, my head knew it was the right thing but my heart was breaking. Today I know in my heart that I did the right thing. You will get there as well.

I do hope you come back often. This is a great place for not only advice and expeirences but for support and just venting. We are all on the same journey and nothing comforts more than to connect with those that truly understand the road we travel. So here's your stack of towels. Hang on because we have the other end. It will take you time to adjust, just as it will your Mom. All change is stressful, even change for the good. So give yourself time. Spend some special time with your daughter and take some special time for yourself. We are here for you.....

Love, deb

 
Old 02-07-2009, 06:07 PM   #6
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Re: A newbie who is sad, feeling helpless and grateful to you all!

Sue, I understand how you feel because I placed my grandmother in a Nursing Home 2 weeks ago. I actually had no choice because she broke her hip, but I realize now that it was the best thing for us both. She is in a place where she can get better care than I was able to give her here, even if she didn't have a broken hip. It gives me peace of mind to know that she's at least being bathed every day and dressed in clean clothes. The people in these facilites are trained professionals with experience in dealing with dementia. It's also the best thing for me because I was at the end of my rope when fate intervened. Sometimes now I can feel all the stress of the past years draining out of my body -- the stress that comes from living with a dementia patient. It sounds like you have a family; if so, they don't need you in a stressed out state.

It occurred to me today while visiting my Grandmother that maybe we can have a much better relationship during the time she has left since we are no longer living together. She is always so glad to see me now. When she was here she always seemed to be angry at me. Now I can actually enjoy just being with her, not feeling stressed angry or resentful.

Please know that you have done the best you could. This is just the next step in this journey.

Good luck.

Joel

 
Old 02-07-2009, 06:50 PM   #7
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Re: A newbie who is sad, feeling helpless and grateful to you all!

Sue, I must echo the sentiments of everyone here.

I can't tell you what solace I get from being here....it helps so much.

One year ago this week my mom also went to live in a wonderful place. My mom isn't as advanced as your mom yet so I am sure I can learn from you...but anyway, a year ago I was terrified of leaving her there but it is a wonderful place and they all love her and know what to expect and how to deal with the elderly...especially those with the dilemmas our parents face. You've done what you can and you are now taking the next step in her care. Trust yourself. You are doing what is best for her and you and your family.


Love, Meg

 
Old 02-07-2009, 08:46 PM   #8
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Re: A newbie who is sad, feeling helpless and grateful to you all!

You just brought up an interesting point Joel. I have noticed that I do a better job of dealing with Mom and Dad on visits now than I did when I was constantly with them. That is probably a combination of two things. Your Grandmother is glad to see you. She loves you and it thrills her when you show up. But on the flip side the stress is slowly draining from you and those with dementia absolutely pick up on your stress. I read an interesting book about how to talk with loved ones with dementia. (wish I could remember the name and I loanded it to sister 2 but I will post it here when she returns it) One of the points emphasized throughout the book was the fact that even when they lose the ability to communicate, to understand or speak the words, there is an instinctive mechanism that picks up on our nonverbal cues. Just like you can tell who is angry or stressed or happy by looking at them. That instinct doesn't go away. Actually, without the ability to communicate it becomes more acute. So if you are stressed, frustrated, or angry they pick up on your feelings through nonverbal clues wuch as the way you hold your mouth or the squint in your eyes. If they sense your anxiety then they respond with anxiety of their own. That is all they know to do. It definitely makes sense to me from what I have seen and experienced

Love, deb

 
Old 02-08-2009, 07:07 AM   #9
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Re: A newbie who is sad, feeling helpless and grateful to you all!

Deb that is so true they do pick up our feelings very easily. The other day I was running around the house doing a million things I was feeling very stressed and a little angry. Mom says to me: Are you mad at me? I said no. She said I don't want you to be mad at me. Then she had a little melt down and said I know I can be grouchy sometimes and not so nice, but I don't know what happens to me. I said thats ok and gave her a hug. But yes she got a little apprehensive when she saw that I was getting angry and stressed out. So they do pick up on our feelings and yes my mom somtimes does know she is behaving not so nice.
However, her reaction to dad when he is angry and stressed is totally different. She becomes angrier at him and will fight back and have a totally different (angry) look on her face when he comes around. So with him she fights it. With me she still wants to make sure we are on good terms. Interesting!!

Love Pauline

 
Old 02-08-2009, 08:39 AM   #10
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Re: A newbie who is sad, feeling helpless and grateful to you all!

There is a lot of insight in what you said Pauline. You Mom is picking up on your stress and personalilzing it. They don't have the mechanism to look outside of themselves to figure out what else might be upsetting you so it has to be then. My Mom does that all the time.

Then there are those that have left lasting impressions that linger. Either there is something annoying about them or some past history that might have been repressed. Mom is very proned to this kind of anger.

.... or it might be that they are close enough that the loved one thinks they can take out their agression on with no reprocussions. I noticed when I was working in LTC that a patient usually takes out their aggressions on the one person they love the most. It was as if they felt safe. There was a bond there that would withstand.

Since it is common for damange to occur in the frontal lobe, which controls judgement and awareness of consequences, it makes sense that what comes into the brain goes out without processing the consequences... what we tend to see is very raw.

Love, deb

 
Old 02-09-2009, 09:16 AM   #11
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Re: A newbie who is sad, feeling helpless and grateful to you all!

Hi Sue- I am also new to this site. My MIL is 93, we moved her to an assisted living facility 3 years ago. She was in good health overall, but has macular degeneration, so was no longer able to cook. About 6 months ago, she started having "spells", would pass out and the nurses on staff would not be able to get a pulse or any vitals...the longest one of these lasted was 10 minutes. (she has a DNR order on file) We now think these are TIA's. After she began having these, we noticed the change in personality. Became paranoid, accusing people of stealing her things, which of course we would find "hidden"...but she had no recollection of hiding them. That behavior stopped, however she then began calling family members at all hours of the day and night because she couldn't understand time. ( we took all the numbers out of speed dial to stop that). then she began going through all of her belongings, constantly sending boxes of stuff home with my husband (her only child) because " it's very valuable and worth thousands of dollars". All just old "stuff" and not worth anything.. Now she has progressed to the point where she is very aggressive. She curses like a sailor (this from a church-going, God fearing woman who NEVER swore and was the sweetest person ever), she hits and has started biting (she drew blood from an aide last week). We have insisted now that they take her off of Haldol. They were giving it to her 3-4 times a day. She is also on Aricept and Paxil. Any suggestions for an alternative drug to help with the aggression? She seemed to get worse with increased dosages although Hospice told us it would help control it. Sorry this is so long, but it does feel good to pour everything out. Any suggestions would be most welcome.

Thanks-
Marg

 
Old 02-09-2009, 11:02 AM   #12
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Re: A newbie who is sad, feeling helpless and grateful to you all!

Sue, hi, I am fairly new to this site too. The people here are so wonderful, understanding and helpful.

We are facing the same situation you have had, here. I had a post about my MIL having accidents and what to do. It is getting horrible to say the least, and yes this is a terrible disease. I know the sadness you feel, my husband and I are looking at the possibility of a home soon, too. I feel like I am failing him, he feels like he is failing his brothers we both feel like we are failing my MIL. But, like I have read from those who have been battling this with their loved ones for so long....sometimes you have to accept that it is for the best. I have children also and a farm to manage. I can relate to the stress you are under at times. Come here often, it will be okay. I think there is a lot of good help and advice right here. I wish you the very best.
Darla

 
Old 02-09-2009, 11:25 AM   #13
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Re: A newbie who is sad, feeling helpless and grateful to you all!

Listen..everyone needs to stop feeling as though they are failures if they can't keep their loved one at home...we can only do so much. There are professionals who understand this and know how to handle it and cope better with it than we do. Because my mom is not living here in my home doesn't mean she is loved less ..it means I listened to advice from those who knew more than me and did what I had to do. It was the best thing for her. Harder than hell for us but better for her. Be kind to yourselves people. We are all doing the best we can.

Love, Meg

 
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