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Alzheimer's Disease & Dementia Message Board
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Old 01-25-2010, 06:20 PM   #16
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Re: My Mom..Dementia

Thank you Ken,
Yes..I have come to see that. It certainly does appear to be a very caring forum. Trust me there are times when I feel maybe I just can't do this but so far those times have passed with me saying to myself don't be silly..of course you can. I haven't been doing this all that long and I'm just not ready to give up..yet. Moms past the stages where she would be able to join into activities..hold a conversation..understand where shes at. She will occasionally blurt out just how scared she is and I must say that tears me up. Right now I almost expect every day to be her last...but in saying that I set up my tree at thanksgiving to give her a little joy as I didn't expect her to make it that far and shes still with me. I am taking this all in Ken.. I want to give myself some time but I also want to be strong enough without guilt to accept outside help if I find I'm beginning to weaken.

 
Old 01-25-2010, 08:40 PM   #17
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Re: My Mom..Dementia

You last statement was very important Ocean. Never eliminate any possibility and be strong enough to change your mind if necessary. You may have your mind made up today but tomorrow is a new day and you don't know what will come.

Yes, this is a wonderful place with amazing caregivers who are or have cared for a love one with this disease. We have learned through the school of hard knocks and the help of our fellow care givers here. Myself, my dad has had vascular dementia for over 10 years and mom is in her 3rd years diagnosed with ALZ. I watched my grandmother die of this disease and worked in long term care for years.

They gave my grandmother 24 to 48 hours during a blood infection. She lived for another 2 years in a nursing home. It was the hardest thing my Mom ever had to do but she realized it was best for Nannie.

Then there is my Dad. He was not supposed to be alive when I arrived home. That was 32 years ago last December!!! Then we were told again that he would not live... and he did. Then we were told 50% chance of coming out of surgery... and that was about 24 years ago. I have all but given up on him twice lately.... and as of today he has rebounded once again.

There is a dear lady in the facility with mom and Dad that has been in the condition you describe for a little over 3 years.

What I am trying to say is you never know what life holds for us. You have been in this situation for a short time and you are exhausted and frustrated. That is obvious from your post. Hospice is only there if it is determined that the end of life is imminent. Beyond that it is up to you as long as she remains with you.

From all the experience I have had I can tell you that you can NOT do it alone. Help is necessary. I can't say that enough. No, it doesn't have to be in a care facility but you can't be alert, caring, and effective 24//7/365. We all tend to say, "Just one more day" or "Just a short time more". Days turn into weeks, that turn into months. You have said yourself that Mom is far beyond any expectation.

So go with your last statement. Hold your resolve now if you must but please have the clear sight to know when you can no longer handle with situation.

As for care facilities. They are not the bleak machine laden places you imagine. Mom and Dad are in a facility that is amazing is so many ways. The caregivers are so kind and gentle. They have a true love and concern for Mom and Dad. I even get calls from off duty personnel asking how Mom and Dad are because they are concerned.... for them and for me. I get immediate calls if anything happens and I am welcome to stay there as much or as long as I need to. Even to the point of sleeping in their room if I think it is needed. They are NEVER alone but surrounded not only by immediate family but the extended care giving family.

As for your fear of machines. That is a decision that you and the doctor will make. I have DNR and Golden Forms on both my parents. They instruct that there will be no machines, or other interventions to extend life. When their time to go... it will be so. In the facility I have experts advice as to when to call in Hospice. Yes, Hospice will come to a care facility. They will do what they do on top of the caring staff and I will be allowed to stay, even sleep, in Mom and Dad's room if I would like.

A care facility was the best option for me because I have TWO parents with this disease and we have been dealing with it over 10 years. Mom was Dad's caregiver but I was her back up. Then her diagnosis and it all turned upside down. I will tell you that the year we tried to keep them at home took a major toll on my health. Now that we have found the right care facility, I have actually been able to enjoy my parents. Neither of them can communicate effectively, Dad is losing major weight (probably because of lack of processing) and he has only limited ambulation on good days. But yes I do enjoy them because when I go see them I have had a good night's sleep, some mental time off, and I am refreshed.

I applaud your desire to keep your Mom with you. Some can do it and some cannot. Neither shows any more love and caring than the other... it is just a function of the situation and the personalities involved. Just know the pitfalls, know when it is time to reassess the situation, and don't wear yourself out to the point that you run into crisis head on

As it has been said.... what is said here is with loving concern for those that walk with us in this disease. We don't take it lightly. So come vent when you need to. Take what you can use from us. Forgive us if we are blunt at time. And most of all know that we do truly care for you and your Mom.

Love, deb

 
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Old 01-26-2010, 03:53 AM   #18
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Re: My Mom..Dementia

Ocean.

We have a little saying around here.



There is "No Guilt In Care Giving".



You do what you think is best for today. And if that doesn't work, you get up tomorrow and try something different.

You might want to go ahead and start looking at care facilities while things are not so critical for you. Ask other people for recommendations. Go visit them. Get your name on their list for admission.

That way, when you come to the point that it's time to do it, you've already made the necessary arrangements and have a plan.

A little preparedness goes a long way.

Hang in there, we'll be here to talk. K

 
Old 01-26-2010, 06:39 AM   #19
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Re: My Mom..Dementia

Oceanwinds I'm a full time 24 hour 365 days a year caregiver. I've done it 4 years full time and 3 years almost full time before that. What we do is hard, stressful, and heart breaking. We (your mom and U)(my MIL and me) suffer together every day. To sit that many hours a day and watch someone slowly-daily deteriorate does something to you. I don't regret it but wish I'd done several things different. My Mil has hospic and is also each day may be her last. Watching her go from someone who's always puttering (busy) to someone who lays in bed not even pick up her arm breaks your heart. I believe all of us can understand that. You do need to get someone in there to let you go get groceries or just to get out of the house. It will make you a better caregiver and keep you sane. As one full time caregiver to another your most important job is to take care of yourself. Which means take time for a hot bath, time for yourself and time for a great big cry session. If not for yourself do it for your mom this is what she would want. Until I joined here I never did anyting for myself now it's different there's me time and life has became easier to deal with.

 
Old 01-26-2010, 06:13 PM   #20
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Re: My Mom..Dementia

Excellent advice Lily... if you are going to keep your loved one at home, please get help and take care of yourself. That includes some time for yourself.

Love, deb

 
Old 02-01-2010, 12:26 PM   #21
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Re: My Mom..Dementia

Thank you everyone! This week hasn't been too hard. I haven't been able to get here til now so I would like to send a heartfelt thanks to all who took the time xo Dawn

 
Old 02-01-2010, 05:18 PM   #22
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Re: My Mom..Dementia

Oceanwinds.

Glad that your week was not too stressful. But, as Lilly said, take time for yourself. You have no idea how exhausted you really are. And even small breaks make a huge difference.

Hang in there. K

 
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