Caring for a parent with dementia

[nmclane]

My mother is 89yo and has Dementia. She knows who I am & the people she sees on a regular basis, but other then that she has pretty much lost her short term memory. She feels stupid, she knows her mind isn't working the way it used to and she hates that and so do I. I would love to have a conversation with my mom, but that is not possible, except on rare occasions. I help her pick out her clothes, make her meals, do her meds, make & take her to appointments. Why? Because she is my mom & I love her.

[dd1535]

I too am caring for a mother with dementia. She is 85 and has been living with us now for 2 years. I can totally relate to what you said about having dialogue with her when her short term memory is no longer functioning as well as it used to function.  I have learned how to reach my mother, and we now have very meaningful conversations that I never ever thought would have been possible before. However, this level of being didn't come about easily.  I had to learn new ways of relating to her which would be understandable and easy to answer.  And the key to what you said about your mother is in the last sentence when you said you loved her. She is so very blessed to have a loving member of her family who wants to connect and relate to her. 

   I came across some amazing resources that have changed the way my mother and I relate to one another and they have been in the form of books, videos, blogs and seminars.  So here they are: Naomi Feil, MSW, author of "Validation Breakthrough." Her books and workshops have been life changing.  She teaches people how to see things through the eyes of the person with dementia, how to validate their present experience with verbage that creates connections. She then offers way to redirect them.  Her techniques lead to harmony, lessened stress and peace in the home.  The next book is called, "Contented Dementia" by Oliver James out of the UK. My oh my, what they are doing for dementia in the UK is amazing, and Dr. James" work is a great example of what is working. The next book which is just fabulous is called, "Deeper Into the Soul," (beyond Dementia and Alzheimer's Toward Forgetfulness Care).  This book is my favorite, by far, because it is so hopeful and practical at the same time.  It was written by Nader Robert Shabahangi, Ph.D and Bogna Szymkiewicz, Ph.D 

  I have become so excited about these positive communication techniques covered in the books above and also by an O.T. by the name of Teepa Snow, that I use them everyday with my mother. Our frustrations, as children of parents with dementia are simply that we want to retain the deep connections, but don't know how to navigate into a place of equal understanding when there are cognitive deficits at play. Some great websites for communication are: www.vfvalidation.org,  www.caregiversgetfit.org and watching Naomi Feil, MSW and Teepa Snow, MS, O.T. on youtube.   Proper use of  these techniques can lessen stress on both the caregiver and care recipient, while offering opportunites of deep and loving connecting.

   I hope this helps you as much as it has helped me. I never tell anyone that I have all the answers, because I don't,  but I am GREAT at finding people who do.  We are all in this together.

Best wishes to you and your mother! 

[AnnB392627]

Thank you for these very valuable resources.  They sound exactly like what I have been seeking.  So glad to have found this group.  What a caring, helpful and encouraging community you are. 

[JaneCares]

Another super helpful resource where you can ask any question is the AARP facebook group. Even if you join facebook only to use this group, it's worth it: https://www.facebook.com/groups/aarpfamilycaregivers. Best of luck!

Jane

[gf50814823]

Hi, My mom is 92 and has dementia. It is so scary for everyone! It seems as though her dementia is worse as it seems right now? week by week. I wouldn't believe it to happen so fast!. I am at odds of what to do? It seems as though it may be a waste of time getting a paid caregiver to come in to see her daily. She may need assisted living before to much longer. I was wondering from anyone out there about being paid to care for her myself? What do I have to do? We live in Michigan by the way. This is getting very difficult! I love her very much? She is unbelievably stubborn and set in her ways.

[ds14136761]

I also love in MI & if she is on Medicaid you can pick up a form from your Dept of Human Services to fill out & submit to get paid for caring for her. I don't think it's much, but it's something!

[ad92642917]

I understand caring for a mother with dementia. I actually had to move from Michigan to Wyoming to care for my mother. After almost two years I took the steps to place in in a care center. She receives wonderful care. They are equipped to have 24 hour care. I would encourage you to consider the move. Yes, I had guilt for awhile. However, I now believe in and support care centers. I think by not placing them in a care center we do them an unjustice. I hope this helped.

[aj91541041]

As we face this decision, it's good to read about others who feel the same way. I can't care for her the way she will need to be cared for and that makes it a little easier. 

[intersan]

I completely agree with your decision to place your mother in a care center. My mother lived in a nursing home for 8 years until she passed away 7 years ago. There was no way that I could care for her with her special medical needs. The problem is that adult children often have their own medical problems, are taking care of an ill spouse or helping adult children. There is no guilt as age is something that happens and is to be expected. 

[nm1949]

I really know what you mean about missing the spunk -- I miss that in my mom who has a lot of memory loss, too. Like yours, she also HATES being the way she is, which is so difficult to see and deal with, since she has the same hate over and over again and can't remember!

My mom loves to talk about the past, but she only has a small number of memories -- they are detailed and she loves them, but at the 1,000th time, I'm just not all that interested, though I do try to at least be polite and know that she likes to talk about it. She seems to appreciate that I listen quietly anyway.

Her memories also are "stuck," in that she doesn't like to hear any different viewpoints. Like the other day she says, "That was wierd when you went away to college and then came back the next day! Your father and I were just floored!" That just isn't true. I came back at Thanksgiving like everybody else... She just refused to believe me.

As you said, that's what's wierd. It feels so sad and lonely to be in contact with someone who can't really converse. At first, I just felt irritated; now I can feel more of the sadness and even emotional pain, which is much better. I just try to be as gentle with myself as I can.

It's so good to know that I'm not alone. Thank you.

Nancy

[aj91541041]

My sister and I are just now starting to deal with it. It was good to read your post. We get irritated because we feel helpless. I also don't live nearby so when she calls and starts asking where my sister is who lives nearby, I get anxious because I can't do anything. I think you're right about feeling the emotional pain and learning to interact with who she is now instead of who she was.

[jj45429365]

I take care of my mom also with dementia.She will be 81 in July it's been three years taking care of her. Her personality is timid from before which is ok, I just miss her spunk she use to have. It's hard to see her decline with her memory.

[Quackers]

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@nmclane wrote:
My mother is 89yo and has Dementia. She knows who I am & the people she sees on a regular basis, but other then that she has pretty much lost her short term memory. She feels stupid, she knows her mind isn't working the way it used to and she hates that and so do I. I would love to have a conversation with my mom, but that is not possible, except on rare occasions. I help her pick out her clothes, make her meals, do her meds, make & take her to appointments. Why? Because she is my mom & I love her.

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Just a thought, but have you tried talking to your mother about things she does remember? My mother had short term memory loss that progressed over the years and like you it was nearly impossible to have real conversations. Discussing currents events was hopeless,  but when I would ask her about things past (family, cooking, anything really), she did well. I think the long term memories remain even though the short term memory no longer functions, and it can make a person feel good to be able to talk about  things they still know about.

[ds14136761]

I agree! My 82 yo mother has trouble even forming comprehensive sentences but when I talk to her about her past life she's a different person & does remember.

[Mrdubious14]

After reading your post, I thought I had wrote it. Same situation here. I'm 56 and caring for my 85 yr. old mom with dementia. I do all the things you do and then some. I work full time and worry when I can't be here. I have two older siblings whom have proved themselves unreliable. At least I can sleep at night with a clear conscience.My life is not what it use to be. I have no social life and when friends call I have to pass. The past 9 years have been a bit challenging ( dad passed 2012). Dad had health issues mom had difficulty helping him so I stepped in ( moved in) to help mom. Brought us closer as a family. Wish I could say the same for my older brothers. We do what the day requires us to do. Cause we are good people and hope that someone will be there for us when we need help. Take care!

[nmclane]

It's true what they say about safety in numbers, I know I feel better knowing there are others out there doing & feeling the same things I am.  Now maybe that sounds odd, but I think you will understand.  I do feel guilty when I'm not here, but know I need time away now and then. I have no siblings, so I don't have family to help, but it seems even some with siblings are in my situation also. I hope you are doing well, have a blessed holiday. 

[Jlincoln008]

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@Mrdubious14 wrote:

After reading your post, I thought I had wrote it. Same situation here. I'm 56 and caring for my 85 yr. old mom with dementia. I do all the things you do and then some. I work full time and worry when I can't be here. I have two older siblings whom have proved themselves unreliable. At least I can sleep at night with a clear conscience.My life is not what it use to be. I have no social life and when friends call I have to pass. The past 9 years have been a bit challenging ( dad passed 2012). Dad had health issues mom had difficulty helping him so I stepped in ( moved in) to help mom. Brought us closer as a family. Wish I could say the same for my older brothers. We do what the day requires us to do. Cause we are good people and hope that someone will be there for us when we need help. Take care!

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What a great name, Mr. Dubious!

And what a great son you are.

The uneven 'helping' of adult children for a needy elderly and frail parent is such an issue, so common, that i dare say it's almost universal. The cop outs by siblings are so numerous. Too busy. Can't stand to see mom like that. I'm too far away. Blah Blah Blah. It is hard to confront family members who are shirking. What have you tried?  Sometimes it helps to have a gathering (and holiday time can help). Then ask a trusted uncle or someone all the siblings respect (is there a clergy person among the cousins?) who can say, so, how are you all taking turns to help your mother? I understand Mr Dubious is doing the lion's share. Let's come up with a plan for you all to give him respite!  

I also want to encourage you to get help. If she can afford it, you can pay for help. An aide can help feed her dinner and wash her up and tuck her into bed from 5 to 9pm one night a week and you can go out for dinner and pick up some groceries and get home by 9. Or find out what your area provides for free by typing in your zip code into eldercare.gov. The agency it will list has social workers you could meet with, again for free (your tax dollars at work) and advise you: do you think she'd benefit from day care? Would Meals on Wheels help with nutrition and expense? Pick her brain.   If she is a veteran, there's something called Aid and Attendance which provides grants to families caring for a veteran at home.

Reach out. Don't be a martyr. Do be dubious. Keep sharing! What helps you?

Jane

[nmclane]

I can only talk to her about childhood, pretty much everything else is gone. It is really hard to watch her mentally disappear.
I blog about my experience to share and for therapy.

http://nmclane1227.blogspot.com/2015/11/a-disappearing-view.html

[Jlincoln008]

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@nmclane wrote:
I can only talk to her about childhood, pretty much everything else is gone. It is really hard to watch her mentally disappear.
I blog about my experience to share and for therapy.

http://nmclane1227.blogspot.com/2015/11/a-disappearing-view.html

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I like what you wrote about in this one about hiring aides: http://nmclane1227.blogspot.com/2015_08_01_archive.html  

Glad to hear it helps keep you sane and provides good care to your mom!

Jane