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Old 09-18-2008, 11:19 AM   #1
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Confused and feeling guilty

I am having a really hard time dealing with this. Mom is 87 and has end stage parkinsons disease with dementia. I know she does not mean a lot of the hurtful things that she says to us and the staff at the care facility that she is in. I feel terrible seeing her rapid mental decline that she is in, and I guess this is just part of the disease. I had to put her in the facility last March. I could no longer care for her at my home between the dementia, and caring for her round the clock alone. I am an only child with no real close relatives to give me help with her care. She is wheel chair bound, and is a total assist with everything. The doctor and all of our relatives had told me I needed to put her in the care facility, I understand that she needed to be there. But I can't help but feel guilty everytime that I see her, like is she getting worse because she is there and did I contribute some how in her decline? I just could not physically lift her anymore. I go daily to see her for a couple of hours. One time I had run into her doctor when he had been there to check in on her, he and suggested that I might try cutting back on the time I go over there to see her. Start trying to go every other day, and maybe get to the point I go every third day. He pointed out that Mom is trying to fit in as part of the family there, and it is hard on her and me to make the adjustment when I am there so much, I guess. I don't know if I can do that. I feel guilty when I am not there. She gets so confused and frightened. I sometimes feel like I am going to go crazy! The stress is really starting to get to me.

 
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Old 09-18-2008, 12:23 PM   #2
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Re: Confused and feeling guilty

Try not to feel guilty. No one (except yourself!) ever expected you to take care of her 24/7.

I did the same thing, for 5 years. When my Mom was in the NH, I felt I had my life back. I became physically and mentally healthier. When I did visit her, it was hard - she didn't remember me - but I knew she was getting care I was incapable of givng her (incontinent, wheelchair bound, needing to be fed, washed, bathed etc.)

You did the right thing. Now follow the doctor's advice and go out and find something else to do ... fill up your new life with good things.

Love,

Martha

 
Old 09-18-2008, 05:15 PM   #3
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Re: Confused and feeling guilty

Rhoda,
You should try to do what Martha suggests. She knows exactly how you feel because she has been there. She is a wise and caring person. My Mom is in AL at the moment. She is progressing into dementia at a rapid rate now. I'll soon be in your shoes. My worse nightmare.
You'll be in my thoughts and prayers.
Chris

 
Old 09-18-2008, 07:19 PM   #4
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Re: Confused and feeling guilty

Thanks! I think the guilt comes from the fact she had asked me one time to please never send her to a nursing home(she said this to me about 7 or 8 yrs. ago when she was in good mental and physical shape), as she had to put her mom in one when she was in her 80's, and felt guilty too, like she wasn't patient enough with her mother and maybe could have done better by her mom. Of course, I told her I would always take care of her and not to worry. But, I guess we never forsee certain situations that can happen that change all good intentioned plans.

 
Old 09-18-2008, 07:46 PM   #5
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Re: Confused and feeling guilty

Rhoda,
My Mom said the exact same thing to us about her Mother. She put her in a NH "Please don't do that to me". I never promised that It would never happen. I did promise that I would always take care of her the best I could. I am keeping that promise. I am doing my very best.
You are doing the same. It is a heartbreaking thing to happen to one that you love so much. But I can't stop this from getting worse. I can only do what I can do and no more. I think this applies to any daughter or son. Just love her and be there for her. Don't drag yourself down with guilt. It doesn't help anyone. It certainly won't help your Mom. Your a good daughter, doing all you can do.
Now if I can only listen to my own advice. LOL
Chris

 
Old 09-18-2008, 08:44 PM   #6
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Re: Confused and feeling guilty

I smiled when I read the end of your post Chris Martha and Chris are absolutely right Rhoda. Make me number three that has been were you are now. Mom tried to keep my grandmother at home until she had to put her in a care facility. She promised Dad he would never have to go to a care facility. Then she wanted the sister to promise her that she would never have to go to a care facility. All I would ever tell her was I would do my best to be sure she had the best care possible. Now Mom and Dad are in an Alzheimer Assisted Living Facility. Mom is not always happy and could send me on a massive guilt trip if I let her. But......

There was no way we could give Mom and Dad the care they needed at home. We are not a staff of many people working 8 hours shifts and then going home to our families. We are not a staff of trained professionals. We don't have in home nurses, med techs, x-ray machines, and physical therapy. We are not activity directors that can plan outtings and round the clock activities. All we can do is provide the best care possible for our parents.... even if that is in a facility. Why should I feel guilty because I am giving my parents much more than I could give them myself?

Beyond that, I know that my Mom and Dad would not want me to do what I did to myself trying to take care of them at home. I was mentally and physically exhausted by the time we moved them. I had health problems that I had ignored. They love me too much to do that to me.... if they were not afflicted with this disease.

So you did what you did, not just for you, but for your Mom.... and you need to remember that. There is no reason to feel guilty for doing what is best for your mom, and yourself.

It was very hard at first to not be there for Mom and Dad all the time. But once I filled my life with other things and let go a little bit it does got easier. Now I can go visit Mom and Dad every couple of weeks and enjoy being with them instead of burdening myself with a bucket load of guilt. They are where they need to be.... for them and for me.

So take a day off... do what the doctor says.... and give yourself and your Mom a break You are taking care of your Mom.... just like you promised! I will keep you both in my thoughts and prayers....

Love, deb

 
Old 09-19-2008, 07:41 PM   #7
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Re: Confused and feeling guilty

Thank you all for the kind replies. I feel better talking to you all, knowing there others out there going through similar experiences, and understand what we are all dealing with. I went over to the nursing home tonight and fed her dinner, which I do almost every day. And as usual, she got mad when she couldn't go to bed right after dinner. She gets done with dinner at 5:45, and can't understand why they will not put her to bed at that time. I try to tell her that as soon as the second shift gets done eating, about 6:30-7:00, they will put her to bed then. She gets so mad, today she told me to be quiet
when I told her I could not take her to her room. They can't trust her in her room any more alone, as in the past, she has tried to crawl out over the railings of her bed, and has fallen on different occasions. She used to be allowed to sit in her wheelchair and watch tv in her room, but again has tried to get out of the wheelchair, and has fallen. So if no one can be in her room with her, she has to stay in the alz. unit in front of the nurses station in a recliner or her wheelchair. I like to be there to feed her dinner, but she is making it increasingly difficult for me to leave, so maybe I'll have to find a different time to go and visit.

 
Old 09-20-2008, 07:44 AM   #8
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Re: Confused and feeling guilty

It might be a good idea to try another time of day for a visit. Perhaps feed her lunch or visit during the day when you can sit in her room with her. If she is sundowning and calmer at another time of the day it might be better for you both. It is worth a try. I hope you find a time that is more beneficial to you both.....

Love, deb

 
Old 09-20-2008, 06:34 PM   #9
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Re: Confused and feeling guilty

Quote:
Originally Posted by DGabriel10 View Post
It might be a good idea to try another time of day for a visit. Perhaps feed her lunch or visit during the day when you can sit in her room with her. If she is sundowning and calmer at another time of the day it might be better for you both. It is worth a try. I hope you find a time that is more beneficial to you both.....

Love, deb

I went to see her today at 1:00 in the afternoon today and stayed until about 3:00. She seemed better, just sleepy. I managed to get her awake enough to go outside this afternoon and get some fresh air. What actually is sundowning? I do think that early afternoon works better, for her. This way, if I leave by 3:00, she still has about an hour and a half to nap before dinner.

 
Old 09-21-2008, 09:16 AM   #10
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Re: Confused and feeling guilty

The cause of sundowning (late day confusion) is not know, but it is known that many elderly individuals are worse at a certain time of day (ususally about sundown which is where it gets it's name) for whatever reason. The only agreement in the professional world is that it is a period of time, late in the day when the elderly show increased confusion and aggitation. It is particularly pronounced in some with dementia. Some seem to think it is a combination of fatique, low lighting which enhances confusion, and the lengthened shadows. It can be made worse if the patient is in a stange setting or in a facility with the flurry of activity from shift change. People coming and going might be a cue that it is time for them to go home or take care of afternoon responsibilities they used to have. It is also made worse if there is any patient discomfort. If there is an illness or other distress it will be more prounced in the late day.

Making sure your mom is well rested, even if it mean a nap, may help. Outtings, visits, and other activities should be limited to the early part of the day with time to relax and wind down before the later part of the day. Decreasing stimuli might help. Eliminating discomfort and identifying any underlying medical reason will help..... especially UTI's. Simple allergies can be enough to trigger extreme behaviors. See if you can identify a trigger. This might be difficult but it's worth a try. Sometimes time out, away from confusion, can be beneficial. Keeping things as simple as possible may help. And sometimes there is nothing that can make it go away completely. Medication just takes the edge off the agression and angst. Then we start a new day....

My Mom is the poster child for sundowning and nothing has helped..... Dad has it but with medication his is limited to repeatedly locking the door and asking repeated question. Each patient is different.

Hope this helped

Love, deb

 
Old 09-21-2008, 08:58 PM   #11
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Re: Confused and feeling guilty

Thanks for explaining sundowning to me. I really do see that in Mom in the afternoon and early evening. Tomorrow I'll try right after breakfast to go over and see her. Today I went right after lunch, and she was already tired and agitated. Maybe I'll find a good time yet!

 
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