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LillyCO · 03-18-2013, 12:08 AM

Hello all,

I'm new to this board and new to being a caregiver for someone with dementia. My mom first started having memory issues three years ago when my dad noticed. My mom went to a neurologist and was told either that she had a stroke or that she had some areas in her brain that looked like small strokes (maybe vascular dementia). She was started on Exelon patch. My dad retired from his job shortly after that in part to help care for my mom. He died unexpectedly a few months later.

My mom has been living on her own since then. My sister and I both live far away and we are both young - just getting married and starting our own families. I have a brother with disabilities who lives with my mom part time.

I'm feeling more and more concerned about my mom living on her own and would like to set up more support for her. She has friends who help watch out for her but nothing formal. The changes with my mom are quite startling at times - she repeats the same thing over and over again, when she came out for my wedding she was dressed in torn and dirty clothes and at one point almost used a trash can for a toilet. Recently my mom was hospitalized for back pain and spent a week in the hospital because she developed delirium and wasn't safe to be discharged alone. I flew out to take her back home and my sister came out for a week or so after I left.

Most attempts I try to make at getting help for my mom get thwarted either by my mom or my sister or both. My sister gets very upset when I say my mother has dementia and that it's just a matter of time before we need to find another place for her to live. I set up an appointment with a geriatric care manager to get my mom more help at home but my sister and my mom both went to the appointment and made it seem like everything is fine. I thought my mom's neurologist might help, but he told my sister and I that he thinks my mom will get better on her medications and "it's premature to look for other living arrangements."

Luckily all the legal paperwork has been put in place (mainly due to my dad) and I'm the DPOA both financially and medically. My mom also put together advanced directives. In the meantime I just feel like I'm waiting for things to fall apart so we/I can do what needs to be done. I'm worn out by fighting with my sister constantly. When I talk to my mom on the phone it's getting more and more difficult to hear her repeat the same things over and over and I've sort of been avoiding it. She doesn't ever seem to remember the last time we talked anyhow. Any suggestions?

ninamarc · 03-20-2013, 02:01 PM

I think you are right that Mom needs personal caregiver. She cannot live alone and wait for bad things to happen. You said your brother lives with her part-time, does this mean that he could watch her sometimes, if not taking care of her? Just watch her and notify people if anything happens? I assume he is taken care of. Your sister is in denial or she doesn't understand Mom's condition. The neurologist is not a caregiver and he has no right to say Mom doesn't need help because he doesn't live with her to see it on daily basis. He is not family and not a caregiver who really understands the daily issues.
You really need to sit down with sister to make her understand that it is better early than later for getting someone to help her. Or the sisters have to move back. Or you can move her to where you are and find a good facility for her. She needs to be with family. This way you can see her every day and make assessment. Phone calls don't see everything and Mom can lie or say what she thinks, not the reality. She may be in her own reality and won't tell you what is really wrong. You have to see it daily.
Find home care or some home care nurse who understands dementia care and hope you can educate your sister. It is very common that Mom can behave normally in front of strangers like new doctors, but have some behavior issues on her own. Sometimes she may not even know what is wrong. Your sister is trying to be Mom's "friend" or close daughter by doing what Mom wants, but she needs to see that what Mom wants is not what Mom needs.
I hope you can find the support so sister can understand. Try to contact Alzheimer's Associate chapters in the local area to get support. You can ask them what to do.

Good luck,
Nina

nshooter · 03-20-2013, 08:00 PM

Do you know what medications your doctor said would help improve or stabilize your mothers condition. Would you be opposed to letting your sister take care of her for a while, or is she unable to do so? How long has your mom had dementia? Is she able to do things independently such as getting dressed, going to the bathroom, and eating? Do you think she would be better off in a nursing home or an assisted living facility. Have you looked into getting her occupational or speech therapy services at home?

Gabriel · 03-21-2013, 06:28 AM

LillyCo... From what you have said here, your Mom already needs more help than she is receiving. She probably thinks she is fine at home alone but she also thinks she has not told you that same story 5 minutes ago. She may believe she can manage just fine but she also thought she was appropriately dressed when she arrived. Your sister is in denial. Who wants to believe mom has dementia, but there comes a point you have to accept the diagnosis you are given. Many doctors are CLUELESS when it comes to dementia. There is no medication available that will "improve" Mom's dementia. The medications available do not alter the course of the disease, do not make it better, nor slow down the progression. In a small percentage of people it makes the remaining brain connections work a little better. But this is not long term. Dementia marches on despite the best efforts.

You have the responsibility. Mom gave that to you with the POAs. Apparently, hearing of your sister's denial, Mom had good reason to do what she did. I understand being young, starting a family, and having a live far away. But Mom is unable to maintain and is unable to obtain or even allow the necessary help at this point. It is up to you. Yes, you are sitting there waiting for the next crisis that is going to force your hand. If you do that then you will not have the time to search out the right responses and places that Mom needs. You are worried about sister being angry. That she does not agree with you. Sometimes you just have to leave those with denial behind until they can catch up.

You need to go to your Mom, make an appointment with a dementia specialist (then can't be fooled as easily), go with her and inform the doctor of your observation, and get an appropriate diagnosis. Then you need to make the hard decisions that will get Mom the care she needs. Sister being mad and Mom being upset for a while is better than something horrible happening to Mom... and that is a possibility. I have been there done that and my only regret is that I did not do it sooner

Hang in there and know you are only trying to do what is best for Mom... and go do it!

Love, deb

nshooter · 03-24-2013, 07:34 PM

I would have to agree with Gabriel. If you think something needs to be done with your mother than pursue the options you find fit. You are going to have to make your sister angry if it means taking care of your mothers health and well being.

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