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New to the forum and New to Caregiving - Need to Vent - Any advice would be great!
JulieC.
Posted: Friday, January 4, 2019 11:57 AM
Joined: 1/4/2019
Posts: 4


I'm new to this forum so this will be a long winded post to vent.

About two weeks ago, my siblings and  had to make a decision about my mom living on her own. With out going into all the details of the story she has essentially been relocated from FL where she lived alone to my house in NC with me and my husband. I am the youngest of my siblings, I'm 33, my mom is going to be 74 in February.  I don't know if she has ever been officially diagnosed with Dementia but she is definitely in the early stages maybe a bit farther along. The first day when she agreed to come to my house we packed her essentials in my car and drove her up to NC the next day. We have a lot to still figure out, we still need to get he paperwork, furniture, pictures etc her important memories, etc. My brother is staying temporarily in her house but he does not have the emotional ability to care for our Mom long term. My sister has her own medical issues that make her incapable of caring for mom either so it all falls to me and my husband. We have only been married for 2 years and this is a pretty rough start to the year. It has been emotionally challenging and  he has been fully supportive of this change.

The challenge of course comes from my mom, she does not want to be here AT ALL. It is a daily conversation and I could repeat verbatim what she is going to tell me about how she can live on her own still. That she loves her home, that was the home she and my dad were in together and has all her memories with him. My dad passed away about 5 years ago and my mom has emotionally struggled with that ever since he passed, she still gets very emotional about him when she talks about him. This is a big thing for her and I think why it is so hard for her to leave that house. My heart breaks for her, but he isn't in the stuff or in the house he is with her no matter where she goes but she is clinging to anything she possibly can to not let go of him to not feel like she is alone.

She is also focused on the fact that she can pay her bills still and that her "forgetfulness" is no big deal (and she says she only forgets insignificant stuff) because she writes stuff down. (Which side note she has in-tension tremors and her hand shakes so bad now it is a challenge for her to eat, which that concerns me.  She also does not eat hardly anything through out the day and when i ask her about it she gets mad.) My brother says she has notes every where in the house so she can remember things.  She constantly asks the same questions over and over again when new information is presented to her until it sinks in. And I would say that new information still sticks but it's not 100% of the information that sticks. the gaps she sometimes fills in with what she thought happened and then repeats that til she believes it's a fact when it isn't. 

She is concerned about her documents at the house and wants to go back home to take care of her bills and her taxes since it is tax season, she is hyper focused on this stuff. She gets upset when I tell her that my brother can send the stuff to us and she get so angry saying  you don't know where all my documents are only I can find it, I have to go back....it's very frustrating. She very much has operated best with process and routine and this has just thrown everyone in my family for a loop so of course there is no process or routine yet. While we each are dealing with it in different ways, I am the one that has to repeat the conversations over and over.

I did speak with her primary care doctor in FL he agrees with what we are doing and wil be sending me a letter to this affect for mom to see it and will also be talking with her today or next week about it. He is also going to send a referral to the Memory Care facility in Asheville, which is a few minutes from where I live. I'm hoping that we can get some closure and resources there to help all of us in this transition and difficult time. 

I'm sure there is more I could say but I think this is good enough for a first post...Any advice or help or comments would be welcomed, and I'm glad I found a place I can vent and talk about what my family is going through.

 


D in law
Posted: Friday, January 4, 2019 1:46 PM
Joined: 4/24/2017
Posts: 379


Vent away, so sorry you had to join.  Good for you in getting your mother to your home.  Although it may not be ideal, or in the long term, but just getting her moved is a big deal.

Not that there's any order to this disease, but I would think 1st thing is get Mom to a Dr. and get a diagnosis.  If it is dementia, please read up on everything you can.  You can save yourself and your Mom much grief by learning how to communicate with one another.  For example, if she is getting upset about going home, or being in your home, you should validate her fears/concerns and give a reply that is calming and understanding.  Her reality is skewed at times, so  think of what someone with a skewed reality would want to hear, that maybe the right answer.  This is all trial and error though.  Just know she may not accept a reasonable and logical answer.   Did your Mom appoint a durable power of attorney to anyone?  That needs to be put on the list of things to do now if not already in place.    Kudos to you for already realizing that process and routine are good!  In the early stages, letting Mom do things to feel independent (even with oversight) is good for her.  In my opinion, the longer they are happier and content, perhaps the longer between progression.   Good luck to you.  


Elena95
Posted: Friday, January 4, 2019 1:58 PM
Joined: 8/24/2016
Posts: 130


Having to repeat conversations is normal for people w dementia, also the desire to go back "home" wherever home may be. I would try to give her some measure of control -like letting her put her furniture from Florida in her room, and see if any activities in your area interest her -like art or music. For some in the early stages day programs can help them adjust and stay engaged. There is no roadmap -the saying if you've met one person with Alzheimer's you've met one person with Alzheimers rings true as the disease manifests a little differently in each person. But there are some good guides to how to interact with them, look up the Teepa Snow videos and this website has good information. And come back here as often as needed -we are here for you.
JulieC.
Posted: Friday, January 4, 2019 2:03 PM
Joined: 1/4/2019
Posts: 4


D In Law - thank you, we do have Power of Attorney for both Medical and Financial  it's divided between me and my Siblings. We did that about a year or so ago because I knew this day was coming sooner rather than later.
Deanna_M
Posted: Friday, January 4, 2019 2:24 PM
Joined: 12/24/2016
Posts: 154


Welcome, JulieC. Vent away. You already have some really good advice, but I will toss in a few suggestions as well.

Your situation sounds very similar to mine about two years ago. I wonder if you could change your story a bit to say that she is just "visiting" you for a couple of months so she can "help" you with ___ (fill in the blank). That might make her feel better than being faced with the fact that she can no longer live by herself and that her daughter is caring for her. A visit does not seem permanent; also then since it is just a "visit" there is "no need to worry about her bills..."

When we moved my mom, she did not understand that we were fully taking over her finances and selling her house (and dealing with the contents). We just made it all seem temporary. And, eventually she just stopped worrying about it.

Good luck to you!


Iris L.
Posted: Friday, January 4, 2019 2:32 PM
Joined: 12/15/2011
Posts: 15562


CConsider this.  Don't make the move to your home about your mom not being able to take care of herself.  Tell her that you need her help.  Perhaps with family recipes to cook for your new husband, even if you don't really need recipes.  The idea is to make her feel that she is helping you, not that she needs help.  Keep repeating.

Iris L.


JulieC.
Posted: Friday, January 4, 2019 3:10 PM
Joined: 1/4/2019
Posts: 4


I have tried the "you're just visiting" thing but it doesn't stick more than a few hours really she goes back to being sad/angry and every time she brings up going back home its hard to redirect it but I will try that angle and the I need your help part - I jokingly said to her mom what if I get pregnant will you come stay with me then to help me out?  She laughed. So I get that the concept of needing her help even if I don't need it  will make her feel like she has to stay here for a reason other than her own well being. I will think of things to ask for her help with.

I do think I got a small win today from her Primary Care doctor, he talked with her and explained the Memory Care facility and the evaluation process she will be going through is very in depth. She has agreed to at least "stay" until after we get that done.

She is still fairly lucid and I think remembers about 75% of the information given to her for right now in a non stressful situation but with stressors or anxiety it's maybe only 50% retained or less.


jfkoc
Posted: Friday, January 4, 2019 3:46 PM
Joined: 12/4/2011
Posts: 16018


So basically you have uprooted your mother. Taken her away from everything she knows and told her it is going to be fine.

It is not fine for your mother and it will never be fine. That is the reality you must acknowledge.

You do need to get expert medical advice. There are 13 recognized dementias. The cause can be Alzheimers. It can also be a thyroid problem or lack of vitamin B 12. Since there is a tremour I would also make certain that the Dr you select is an expert in Parkinson's. 

Please assure that the POAs are durable. You will want o meet with an attorney who is certified in Elder Law.

The good news is that you are in a major city and very near Duke etc. Finding the best Dr is not easy.

I would advise not placing your mother if at all possible until you have a diagnosis that follows current protocol.

Take this time and really search for the best placement. This too is very difficult.


King Boo
Posted: Friday, January 4, 2019 6:57 PM
Joined: 1/9/2012
Posts: 2814


Hi JulieC-

Welcome to the discussion boards!   You should be very proud of yourself and your siblings - you have actually gotten mom out of the house!   This is a huge achievement.  So many of us have waited or failed to act until disaster has struck.  Many challenges lie ahead, but you have taken a big, big, step.

Nothing you have done is to your mother's detriment.  One of my big mantras when advising friends is that 'care needs drive the decision making.'  Your siblings could not do care and are in bad positions to help; it is absolutely imperative that your Mom be close to you, you cannot manage care from a long distance.  

My family member was a prisoner in his own home of many years, the once familiar house became overwhelming, a source of confusion.  So many rooms to misplace things, manage, too stimulating.  How could it be, that he could be content in his room in memory care?  It was the best thing for him - he did well.  Smaller room, 1 dresser, a bathroom and most of all, a set schedule.  He thrived and improved once there.   Research well, all facilities are not equal in terms of quality of care, ability to provide care with proression, or their populations.  There will still be much work, visiting and advocacy to be done living in MC, but it permits your husband and you to have your own time together and critical care falls to staff.

Your Mom is at a very difficult stage - hard to redirect, obsessive, angry, and vestiges of awareness that things are not right.   

The best answer is the one that brings the most comfort.  Sometimes, redirection can work, but it is exhausting when it doesn't.  

Please remember a Geriatric Psychiatrist can prescribe as an MD medications to help with anxiousness, depression and obsessive behavior.  It can make the journey more manageable.  It sounds like her care needs make her a very good candidate for Memory Care.  If additional assessment needs to be done, it should be easy to do with attending Memory Care staff.  My LO received his work up after he moved in.  


Mimi S.
Posted: Friday, January 4, 2019 8:13 PM
Joined: 11/29/2011
Posts: 6768


Dear Julie, Welcome to our world. I'm so glad you found our site.

From your library, ask for a copy of Doraiswamy and Gwyther. The first part of the book describers the process that MUST be done before any diagnosis is believable.  There are other conditions that mimic dementia. Some like a lack of a certain Vitamin are easily fixable. Others, like brain lesions, are not.

Also from your library get any book by Naomi Feil with the word VALIDATION in the title. Not an easy read but work every minute for all involved.

Do come and vet whenever you want. If you need to speak with a live voice, call our help line 1-800-272-3900.


gubblebumm
Posted: Friday, January 4, 2019 10:26 PM
Joined: 7/12/2017
Posts: 861


I have decided after breaking out in hives today due to stress to be brutally honest...its gonna suck, stink and be soooo hard..it will not get easier and you need to make sure your family comes first, not mom...and if anyone tells you how lucky you are to be able to do it, well, they are wrong, its hard, and for me, being able to say this is not fair, this is awful at least that honesty feels good and is a release, so its okay to be sad, angry, frustrated...learn what you can, lie, fib do what you have to do to get through the moment. its a mess and I hate to share, but being able to say it is actuatly healthy, so while I am not the one who says, oh it can work you can do this, I am the one who says its okay to pull over and cry by the side of the road when you can
Suziesb
Posted: Friday, January 4, 2019 10:28 PM
Joined: 5/22/2018
Posts: 69


Julie,

Our family's situation was very similar to yours in that we moved our mom from one state to live first with my sister and then to another state where I live. Our dad passed away four years before she was diagnosed and she grieved him, missed her house tremendously, though as time goes by, less so. We told her it was for visits at first. She is prone to falls and absolutely could not live alone anymore after being utterly unsafe in her home two story home, especially living alone. Now she brings up "going back home" just occasionally. I tell her a fiblet that we can go back to her house when the weather gets warmer in the summer. She forgets about it when I change the subject. Also, when I first moved mom out to my home, I had her in a day program which she enjoyed at a memory center. Keeping her involved with activities helped. 


JulieC.
Posted: Monday, January 7, 2019 10:25 AM
Joined: 1/4/2019
Posts: 4


Thanks to everyone for your responses!

I do have Durable POA along with my two siblings. In the state of Florida it was required to have both Medical and Financial, we did that last year.

As the week has progressed and over the weekend I have mostly just avoided the conversation of her going back home, she makes comments here or there but I try not to respond.

So now that she is more calm, less stressed I can see that she is able to remember things a bit better, although there is still a lot of repetition. But she remembers where things are in the house for the most part. She even had the brain power to call a place to set up an auto draft for her monthly payments for one of her bills. - This gives me some hope and let's be honest here I WANT the Dr.'s to tell me she is ok to go home for a little while longer...BUT that likely won't be the case so we will see.

At this point I have basically convinced Mom to stay until after we have seen the Memory Care doctors and had an opportunity to evaluate her, it's a 3 hour process and seems VERY in depth. The Memory Care place is actually called Memory Care, http://memorycare.org/ , and it is a treatment facility with Doctors NOT an assisted living place, they do operate/coordinate with an AL place but I am taking her there to get a thorough evaluation of her mental state so we can make better decisions moving forward about her well being.

I have also looked into Day programs and once we go to the Memory Care place and get their diagnosis, I found one I'd like to look into to see if mom would enjoy it. It sounds like it could be fun for her, maybe make some friends.

My sister is a Nurse and has worked with people in Mom's condition before, so her view of the situation is always clinical and seemingly more extreme, my brother's views are on the opposite of that spectrum where he has just recently realized that Mom is not the same person she was. I think I lie somewhere in the middle of them in my personal evaluation of Mom. So I think it will be good to get a third non biased party's opinion of the situation.



vaeagen
Posted: Monday, January 7, 2019 1:45 PM
Joined: 4/4/2016
Posts: 73


Hi JulieC, Glad you found this place, it really is very helpful and everyone here is so helpful

 

Anyway, My .02 cents is "going home" does not always mean a physical place. My dmil is in early stage 6. She mainly wants to "go home" at transition times during the night getting ready for bed and in the mornings. Also sometimes when she is unhappy at other times of the day but mainly getting dressed/undressed. Now she has only lived in 2 places her whole life....where she lives now (61 years) and her childhood home (which she left when she was 22 yo, you got it 61 years ago). She seems to no longer remember living in her martial home. She WANTS TO GO HOME to her childhood home. Now we think what she really means is I want to return to being 10 or 12 years old living with her parents and brother. Safe, warm, secure with none of the confusion and uncertainty she feels now with Alzheimers. Of course, visiting the home (as expected, it looks nothing like she remembers) does nothing. We do try to redirect her as much as possible.....we have also added an anti-anziety med and that has help a bit. We are still "tweeking" the meds.

 

Just wanted to let you know that wanting to go home does not always mean a physical location but a feeling and time.

 

                 Hope that helps.

 

                         Valerie

        


Sjodry
Posted: Tuesday, January 8, 2019 3:12 PM
Joined: 9/30/2017
Posts: 33


Welcome JulieC,,

So sorry you have had to join this club. I just moved my mom from FL to PA this past March. It helped that I found a lovely senior community with all levels of care (including memory). She flew to PA. prior to moving and loved the community. So it is a lot easier with a willing person who is excited about a move.

With that said, my mom is still in independent care with a huge amount of assistance from me and & my husband. I would suggest that if your mom's circumstances afford this type of community, that it would be easier for you and your husband. Trust me..it relieves some of the stress, but even from a distance of only a few miles..I get 7 or 8 calls a day from her, make multiple home visits weekly to help her, etc., it is still very stressful & time consuming. It will be very hard for you as a new couple. Even with the best intentions and loving care it can change your entire dynamic. I have been married for 38 years this year..and it is incredibly stressful & intrusive of your lives. Essentially, I have reversed roles with my mom and am now the parent.

BTW, you mentioned her essential tremors. I think someone made a suggestion to get her to a specialist (that should be a movement specialist..a neurologist with a specialty in movement disorders). I know because I think I am about to get a Parkinson's diagnosis myself. Yikes...let's add some more stress, right.

It sounds like you have made the best decision for your mom and being close to her. My sibling was also not able to help, so I'm it. I am spending a lot of time educating myself & trying to understand what to expect on the journey. As much as I love my mom and feel that moving her nearby is the absolute right decision, there are still many moments when I am chewing the enamel off of my teeth..this caregiving thing is really hard work.

I wish you luck as you begin this journey. 

Take care.

Sandy

 


 
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