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A Few Months In
Underdog
Posted: Sunday, June 25, 2017 2:27 PM
Joined: 6/25/2017
Posts: 327


Hello, I have recently begun this lifestyle of caregiver. My main daily challenge is to finesse the relationship so that I don't offend my wife and create sullenness in her that lasts the major part of the day, or even into the next. Reasoning with her and knowing how far to push any particular issue is a struggle.

I live in a small town far from family, and moving is not an option as our situation here provides a roof over our heads and enables me to be very close as I work part-time . We are 60 years old and finding a job that keeps me this close anywhere else is very unlikely. She is growing very dependent on me and rejects most other local relationships. We don't have much involvement with the health care system. They don't seem to take me very seriously since her condition is not life threatening.

She has frontotemporal dementia. Looking back, I now see the symptoms manifesting themselves for years. I misinterpreted what was going on.

This is my first venture into finding a support network (online or off) and fitting in seems a bit daunting.

 


julielarson
Posted: Sunday, June 25, 2017 3:07 PM
Joined: 9/30/2015
Posts: 1155


Underdog, welcome to the boards. I am sorry that you find yourself in this position but there are lots of people who would love to get to know you and your wife and will answer  any questions you have.. You may want to for yourself post in the caregivers board and also the spouse board as you will find many like yourself who are caring for a loved one with the dementias.. Big hugs to you...
KPHill
Posted: Sunday, June 25, 2017 6:23 PM
Joined: 6/25/2017
Posts: 1


My middle sister has been recently diagnosed with EO with anosognosia, she is in denial and has not shared her diagnosis with myself or my older sister.  This is very difficult for us since we would love to emotionally support her be there for her but can not.  The mere mention of the word dementia or alzheimers sends her into a rage that can last all day.  We are kept informed by our brother-in-law but can not communicate with her on a real level.  Any advice on how to navigate this terrible disease would be helpful.
ndhme
Posted: Sunday, June 25, 2017 6:41 PM
Joined: 5/31/2015
Posts: 1156


Welcome Underdog to the forum we ALL wish there was no need for.  This is a place where you can vent or just put your thoughts out there or ask questions regarding this journey.

When you sign in you will notice there are various titled boards.  We all use each of the boards...whether its just to read various issues being posted about or to post ourselves or post a reply. 

Reading this particular board is very beneficial to us caregivers...getting familiar with the members who are living this disease daily helps us to better understand what our loved ones may be feeling/experiencing.  These members are Dementia Pioneers...very proactive in their care needs and daily lives.  Do you think your wife may like to participate on this board...see that she is not alone...get to know the members here with dementia...learn the processes they put in place to help themselves live a more functional and fulfilling life for as long as they can.

Being a spouse care partner/caregiver, you may find you will get more replies to your post under the Spouse/Partner or the Caregiver boards.  Again, everyone is welcome on any board.  

We live in a rural area and had to travel 100 miles to get the special care and management my hubby required (dx at age 55)...neurology, cardiology etc.  Primary care was fine but they are not the specialists.

Our loved ones do become very dependent on us.  Their world is ever changing and it gets scary at times for them.  We are their anchor...their safety net.  That being said, it can get very stressful...we are trying our very best to keep them safe and as healthy as we can.  Do not reason with your DW...it becomes very hard on them to process reasoning, try to validate her feelings and find a workaround.  As she progresses, thoughts and processes will flicker, think of a light bulb that is going bad, flickering on and off...the neurons in the brain are misfiring, making a bad connection...this has to been so frustrating for them.  

It is good that you are able to still work part time...this gives you a break, gives you something else to concentrate on and  provides socialization for you.  I hope we hear from you again...hang in there.

Ellen


ndhme
Posted: Sunday, June 25, 2017 6:52 PM
Joined: 5/31/2015
Posts: 1156


KPHill,

Welcome.  My advice is to not mention her illness...she has not accepted the diagnosis yet and may not for a long time.  Do not treat her any different than you have all your life, except, do not argue, reason or say no to her.  When you are with her and she seems to be struggling with something (a task), do not point out what she may be doing wrong instead ask if you may help her.  If she mis-speaks, do not correct her...what is happening is her thought being transmitted to words breaks down and can be misunderstood.  Just have patience with her and do not treat her like a child...she needs to know that she is loved and valued.  Everything should fall in place in time...just be her family, her friend and you may become her confidant later on.  

As in my post above, join us on the Caregiver boards.  You may receive more replies and experienced tips for this journey

Ellen


Mimi S.
Posted: Sunday, June 25, 2017 7:01 PM
Joined: 11/29/2011
Posts: 7030


Welcome to our world, Underdog. We are so glad you found us. Yu may get more replies by going to the Spousal Board above.

In my opinion, your wife has the most difficult dementia to deal with. The normal meds such as Aricept are not appropriate.  Her loss of memory may not be the stumbling block for a while.  It's the behavior that she has no control over that is so difficult. 

From your library ask for any book by Naomi Feil with the word Validation in the title.

As you are finding out, reasoning doesn't work.

I would certainly try to find, possibly a neurologist, with experience with FTD. Even if you have to travel, it will be worth it.  Possibly see if there is any research study in your area for which she would qualify. Call our help line: 1-800-272-3900 and ask about Trial match.
Good luck!!!!!

 


Sayra
Posted: Sunday, June 25, 2017 9:13 PM
Joined: 8/10/2016
Posts: 2309


Welcome Underdog,  Just keep hanging out here.  Read the posts, ask questions when you have them, vent when you have a rough day.  I was a clueless individual when I showed up here.  I am a caregiver for my mom.  Just keep hanging out here and you will start getting to know all of us and we will get to know you.  We all need each other. Take care

Sara


Underdog
Posted: Sunday, June 25, 2017 10:11 PM
Joined: 6/25/2017
Posts: 327


I'm humbled by your responses, Thank You!

Thanks Julie, I'll check out the other areas. I saw the early onset heading and we are just at 60, which I assume is young for this.

 

Special thanks, ndhme; What you said about reasoning resonates. It's hard to shed old habits but I definitely want to figure communication out. She is very dependent on me because of the circumstances of our lives and the distance of our main support people. She was irritable when I suggested that she read or write on this forum. Although we speak freely and frankly with each other, family and friends; She explains that she wants to feel normal as long as possible and this forum may make her focus on unpleasant things. But she gives me her blessings and knows I need the information from those that have been through it.

Thanks Mimi, I'm so scared of the medication road ahead, she's already been prescribed inappropriate medication. They started out by assuming she was depressed or anxious, which was completely off the mark. I suspect it hurt her attention and memory. If I took all of my well-meaning friends and family advice, she'd be taking 14 tablets and supplements a day. We are trying to go one pill at a time and see how it affects her. We were most confident with Turmeric with Curcumin. Don't know if it's acting as a placebo but she has trusts her nurse sister's judgement.

Thank you Sara, indeed I'm going to participate here. I have no idea what I'm doing and the doctors are difficult to read sometimes. I will explain some of my concerns in a more appropriate area.

 


Iris L.
Posted: Sunday, June 25, 2017 11:44 PM
Joined: 12/15/2011
Posts: 16563


Living with dementia is scary.  A great place to be is with others who are walking the same pathway.  The outside world is not empathetic.  We on this board are not down in the dumps, at least, not most of the time.  We lift each other up and share challenges and what works for us.  I hope your wife can join us on this board.


Iris L.


Underdog
Posted: Monday, June 26, 2017 10:31 PM
Joined: 6/25/2017
Posts: 327


Thank you Iris, but on an interesting note..?.. When we walk through a store, sometimes there are people in wheelchairs or with walkers that make eye contact and greet us. It didn't seem to happen so much before, and my wife has always been a publicly social person. It's like there is an intuitive connection but I can't back it up scientifically.

But no, she can't handle the idea of this forum, she gives me her blessing though.

 


alz+
Posted: Tuesday, June 27, 2017 9:39 AM
Joined: 9/12/2013
Posts: 3560


intuition - public anonymous connections do happen.

LOVE "underdog" photo!


julielarson
Posted: Tuesday, June 27, 2017 9:42 AM
Joined: 9/30/2015
Posts: 1155


Underdog I am glad you are here.. I am so glad your wife gives her blessings for you to be on here.. Keep reading and you will find answers to questions as they come up.. There is much education on these boards.
BlueSkies
Posted: Tuesday, June 27, 2017 9:50 AM
Joined: 2/24/2016
Posts: 1096


Underdog, so sorry you and you DW are having to deal with this illness, but so glad you found your way here.  Sorry to hear your DW can not join us, but some just find it too difficult to face head on.  Maybe later as she adjust to the diagnosis she will change her mind.  Either way, we all do what we have to do to be okay with this illness.  I respect her need to not be on here.

I think it was a great decision for you to come and join in.  You will get a lot of support and information here.  So welcome underdog!  I am looking forward to getting to know you better.

Lots of love to you, BlueSkies


Underdog
Posted: Tuesday, June 27, 2017 10:40 PM
Joined: 6/25/2017
Posts: 327


Thank you alz+, Yeah, that's Duke, my wife's companion for 17 years. Wow does she miss him.

Thank you Julie and Blue Skies, Donna wants so much to live on as normal as possible and while she's not unreasonable about it, I discourage friends and family so they aren't always giving her advice on how active to be or what to eat or take. I try to get them to call and share short, fun and uplifting anecdotes about their day.

I'm beginning to understand how different people's reactions are to this disease. From what I can tell, her brain fatigues her in a physical way. In other words, her making the simplest of decisions, or going to the doctor, fatigue her body in the same way another would be tired out by power walking. 

I so much appreciate the respect you all have on this site. I've learned so much already, on how to relate to my wife.