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07/29/2009 10:55 AM

My sister, 66yrs old has dementia, I need support

marcydurost
marcydurost  
Posts: 25
New Member

Hi, My name is Marcy. I am a new member and looking for people who have experience with loved ones with dementia. I am struggling with the phone calls I get 4-6 times a day from Sharon, that's her name. I need to learn how to listen and respond to her without getting stressed everyday. I do limit the amount of calls I take. I have such mixed feelings about this illness, how do we as a family support her and also stay sane at the same time.

We have taken over her finances, doctor's appointment, food shopping. She doesn't drive and stays in her apartment 95% of the time. She is scared of the short term memory loss and struggles with acceptance of this condition.

Any suggestions on how to help her? Thanks

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07/29/2009 01:06 PM
MaryR
MaryR  
Posts: 4122
Group Leader

Hi Marcy, Welcome to the group. I am sorry to hear that you and your sister are having to face this. It sounds like most of the day to day practicalities you already have well in hand, but that it is the emotional aspects (anxiety, maybe depression) that she is having the most trouble with.

If she is leaning on you as most (maybe all) of her social support she may pretty much withdraw from the rest of the world. This is not at all uncommon since the world may not seem safe to her when she is uncertain of her own abilities or is embarrassed at how much she forgets in social interaction, but it makes it harder for her in the long run (and you since no one person can be a whole social world for another).

If there are any support groups for people with dementia in your are that you could take her to and/or encourage her involvement in that might be helpful (local alzheimer's association would probably know if there is one and where). Or if she has computer skills there are some online where she might be able to find other people who have been through the same things she is facing now and could help her find her way through it. There are some here, also the Alzheimer's association seems to have an active message board. http://www.alz.org/ living_with_alzheimers_message_boards_lwa.asp

Counseling, or medication may also be options depending on how severe things are.

For you, I can relate, though my Grandma didn't call on the phone so much, but the situation trying to help take care of her needs and the emotional impact on her could very easily get overwhelming. Lots of times I had to stop and take a few minutes to breathe, pray, or go somewhere private to let my own frustration out where it wouldn't spill out into hers...especially when she was already really emotional.

It helped to have other people in the same situation to talk things over with, and to remind myself that while I could help her get through it, there was no possible way I could "fix" the real problem for her. Some ammount of the unhappiness was (and is) inevitable as she faced the reality of having dementia. It is a change and even if I minimize the impact as much as I can, there is still a change to be faced.

It is a hard diagnosis to get and difficult to deal with for the family too. I hope some of this turns out to be helpful for you and your sister's situation. Welcome to the group.


07/29/2009 02:00 PM
marcydurost
marcydurost  
Posts: 25
New Member

Thank you so much Mary for writing to me. Yes, it really is such a terrifing thing to go through. My sister, Sharon is so young but hasn't really taken care of herself for years. She suffers from chronic depression, diabetes, and anxiety. With short term memory loss she can't remember how many times she calls me or anyone else.

I live in Santa Rosa, and she lives in Vacaville, CA so I don't see her a lot. Her daughter does live in Vacaville but works full time. She does however, clean Sharon's house and does the shopping and takes her to doctor appointments. A lot is on her plate. But Sharon has always leaned on me for emotional support and now she is calling all the time. She is scared, I know this and really try to be patient and supportive.

I will look into an Alzhiemers day program in Vacaville. I hope there is something like this there.

She is a very 'social' person and this would definately stimulate her.

Thanks again, Marcy


07/29/2009 09:31 PM
MaryR
MaryR  
Posts: 4122
Group Leader

I hope it works out to be a really good thing for her. My Grandma was never terribly social so just talking to family with a trip to church every now and then was enough for her, but for a lot of people it really isn't. I am glad that her daughter is involved too so at least it isn't all falling on one person.

I suspect that you will also get good as time passes at knowing what things to say to comfort her the most. I got very good at knowing what things my Grandma typically needed to hear in order to feel safe again (at least for a little while). A little social interaction may also help keep her from getting as focused on the scary aspects that she can't change. Best of luck to you!


07/29/2009 09:35 PM
lovingyoungwife

Hello Marcy. I'm sorry to hear that your sister has dementia. My grandmother had dementia and my husband has Alzheimer's. It is really frustrating for the person with it and family members dealing with it. My grandmother used to call my mother in the middle of the night, long distance, just to say, "Dang, I've got the wrong number again!" It would really hurt my mother's feelings because grandma would just hang up and not actually talk to mom. But you know, bless her heart, she just didn't really realize what she was doing. We would go see her and then the next day she would say, "Why don't you all ever come see me?"

I don't really have any advise. Just want you to know that I understand the frustration. But remember, your sister can't help what is happening to her and is most likly just as frustrated as you are.

Dose she live by herself? It would be good if she had someone with her. It would help her feel more secure.

Blessings,

LYW


07/30/2009 05:34 AM
Chewy
Posts: 26
Member

Marcy R:

Hi! Welcome to the group.

My mother was diagnosed with dementia is 2005 it has been an ongoing learning process. My suggestions to you would be first get her diagnosed as to the level of dementia/alzheimers if you have not already done so. Check with a neurologist. Once you find out her level, check with local council on aging for the service provider in your area that assists seniors with all the services you and her daughter are providing such as food shopping, personal care and companionship. This will relieve some of the burden. Also, they will provide a consultant that specializes in dementia/alzheimers to offer suggestions. I recommend a daycare program in her area. They usually provide transportation and the daycare will stimulate her mind and meet her social needs. I think you need to discuss her fears with her. With my mother, she needs to be reassured that it is okay that she is forgetting. We all do when we get older. Also, things that my mother is worried about I make sure I take care of it (for example buying what she needs and constantly reminding her that I have already done it). I think it is extremely difficult watching my mother change but life is full of adjustments and we all need to adjust. I am happy she is still with me. I hope this helps.

Chewy.


07/30/2009 08:58 AM
marcydurost
marcydurost  
Posts: 25
New Member

Chewy,

Thanks for the information. I will definately look into the things you suggested. We are still in the process of getting the 'firm' diagnosis. Just had a CAT Scan and will probably push for an MRI to rule out anything organic that could be the trigger.

She has Kaiser health insurance and we have just been dealing with her psych and primary care doctors. I will definately ask for her to be evaluated by a neurologist for a final diagnosis. She is also getting Vit B-12 shots and taking Aricept.

I will also contact the council on aging to find out what is available in her area. Thanks again for all your support. Marcy


07/30/2009 01:10 PM
Chewy
Posts: 26
Member

Marcy:

Aricept is excellent for Alzheimers. I have heard many good things about it. It sounds like you are taking very good care of her. This is a stressful time. Make sure to take breaks and take care of yourself. That is extremely important in order for you to take to be there for your sister.

Another recommendation is to find a psychiatrist. As the illness continues, you will need that type of support. We started with one about a year ago. She is wonderful.

Take care,

Chewy


07/31/2009 04:05 PM
MaryR
MaryR  
Posts: 4122
Group Leader

I can second the recommendation to start looking for a good psychiatrist. Even if things aren't bad enough to need one yet, the odds are very high that as dementia progresses eventually she will need one. My Grandma has had one for years now because of problems that came with the dementia (hallucinations, depression, some anxiety). Her psychiatrist has been a huge help with all this.

Post edited by: MaryR, at: 07/31/2009 04:06 PM


07/31/2009 08:08 PM
marcydurost
marcydurost  
Posts: 25
New Member

Dear Mary,

Thanks for the input. Yes, Sharon does have a psychiatrist and we are working closely with him. In fact today we emailed him and told him we want her to see a neurologist right away and a MRI. He wrote back and agreed, scheduling an appointment for her on Aug 14th! Quick action!

Also, we had a CT Scan done and it does show an OLD stroke, which we new nothing about and the there are changes in the brain probably due to high blood pressure. This is not particularly great news. But we will follow up with the neurologist and MRI to get a firm diagnosis.

Meanwhile, we are not telling her any of this new information. We will wait and let the doctor first tell her then we will be there to support her fears.

This ability to talk with people who knows what I'm going through really helps me! THANK YOU... Marcy

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