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I don't know what else to do
Avigo
Posted: Friday, August 25, 2017 4:33 PM
Joined: 7/16/2017
Posts: 6


This is my first post here. I thought I would try to connect with people who understand what I am feeling. I have a father with a late stage of Alz and a mother with some different dementia. I live in US but my parents are in Italy. They have my brother close by and two caregivers. I moved in US 20 years ago' and I go back and forward every 5 months to take care of them and spend as much time as I can with them. Two days ago' I came back from my last trip of 2 months with my parents and I feel totally overwhelmed, depressed, heartbroken, helpless and extremely in a constant state of suffering. No matter what I did I felt it was nothing. I would get up with a constant feeling of anxieties and I would try to give my parents a shower or a sponge wash, feed them,care for them , love them, reassure them, put relaxing musing for them, try to entertain them.....I hardly ever achieved good results. My Mom mistreated me and my brother, she mistreats the caregiver, she accuse her of infidelity, she is angry, resentful and whatever you do does not help her to feel better. I do everything I can to connect with them and in some brief moments I do but then the next moment come and washes everything away. I am divided by two cultures. In Italy you almost never put your parents in an institution, only at the very end ; in America is totally acceptable and more auspicious to put your loved ones in a place where there constantly are doctors, and special care for people with those needs. I don't know what else to do. I lay down and all I want to do is cry, I am lost in thoughts of worry, of grief, of depression and I have given everything I could, I have jeopardized my life with loss of work and loss of interest and I don't know what else to do to make it better for them and take care of myself. I teach yoga and meditation, I have faith , I believe in helping others and the importance of love before anything, and I have tried hard everything I preach but sometime it does not work. Any of your advice will be greatly appreciated. Thank you.

Avigo
Posted: Saturday, August 26, 2017 7:45 AM
Joined: 7/16/2017
Posts: 6


I meditate on watching whatever thought I have and being the observer of it so to recognize that my thoughts are consequence of emotions or the other way around.

My depression comes from feeling too much and not having space for anything else.....yes I agree guilt is a great motivator.

Thank you for your reply.


llee08032
Posted: Saturday, August 26, 2017 8:58 AM
Joined: 5/20/2014
Posts: 4408


Long time guilt sponge here Avigo. An alz friend taught me that I must forgive myself. Forgive yourself for what you can't control. There is much that we cannot control. Forgive yourself when you have tried your best and it's just not good enough. Forgive your sadness, your grief and depression. Forgive yourself quickly. Forgive yourself over and over and every time you feel you don't measure up. Most importantly. you must forgive yourself for being the fallible human being you are. 
Jim Broede
Posted: Saturday, August 26, 2017 9:27 AM
Joined: 12/22/2011
Posts: 5462


 

 

In troubled times, I compartmentalize my life. Don’t know if that will work for you, Avigo. But it may be worth a try. For a while, I was a 24/7 care-giver for my dear sweet wife Jeanne. Finally, I learned to build in daily respite. I became an 8 to 10 hour a day care-giver. And spent the rest of the day in another compartment. Resting. And rejuvenating myself.  I became a better care-giver. More capable of exuding good vibes. Round-the-clock. The good vibes helped Jeanne. And me, too. I discovered that one can live in several different worlds. At the same time. I didn’t allow care-giving to consume me anymore. Instead,  I always had a delightful world to step into. For relief. Suddenly, care-giving and life, period, became delightful. Balance. Yes, that’s what one needs. Practice yoga. Tai chi, too. Life was meant to be savored. Even in the worst of times. One can find ways to savor it all. Don’t make excuses. Do it. Do it. Do it. With confidence. With verve. With passion. Fall in love. With the totality of your wonderful life. Don’t let your troubles get you down. When there is so much to cherish. Right now.  I am living with my Italian amore. In Minnesota. In the winter, I will join her. In Paradise. Her homeland. Sardinia. Have you ever been there? What part of Italy is your homeland? Imagine life. Flitting back and forth between Italy and America. I have it made. You do, too. Appreciate what you have. A foot in two idyllic worlds. Yes, you and I are the lucky ones. Come to Sardinia. Cristina and I will welcome you. We met on these message boards. Eight years ago. Her mother had Alzheimer’s. Same goes for my wife. After Jeanne died. I went over. To meet Cristina. In Venice. Off we went. For three weeks in the Italian Alps. My. My. So much good. Comes from the Alzheimer’s experience. Make it work for you, too. --Jim

 


jfkoc
Posted: Saturday, August 26, 2017 11:40 AM
Joined: 12/4/2011
Posts: 19642


I so wish I could reach out and just hold you and then tell you that when you are doing your best it is all you can do. There are times when there is nothing left to do. This is hard to accept.

Facing what you are facing is a horrible nightmare. We wish we could wake up. Instead we feel anger, frustration, sadness and yes, grief. 

There is no running away...there is just one step after another. Please know that we are here next to you to lighten the path in any way we can.


Jim Broede
Posted: Saturday, August 26, 2017 1:17 PM
Joined: 12/22/2011
Posts: 5462


 

 

You asked for advice, Avigo. And you’ll probably get the full spectrum of advice. jfKoc gives you good advice. But I take a different slant. You left Italy. And started a new life. For a reason, I assume. Maybe to find happiness. If so, I wish you well. Not sure that you will find what you are looking for. With your parents. But maybe you will. Sooner or later, they will be gone. You don’t have to wait for that to happen before you get on with a bountiful life.  Perhaps even free of guilt. This is the way that life works. Loved ones come and go. Grieve in your own way. But don’t let it wreck your life. Instead, savor the fond memories.  And live the rest of your life to the fullest. Being kind and gentle to yourself. --Jim

 


jfkoc
Posted: Saturday, August 26, 2017 3:22 PM
Joined: 12/4/2011
Posts: 19642


As Jim says, be kind and gentle with yourself. It is really important and not always easy to do.
Avigo
Posted: Sunday, August 27, 2017 10:19 AM
Joined: 7/16/2017
Posts: 6


Thank you Ilee08032 I will work on forgiveness. I will make a big sign on my desk and I will look at it every day.
Avigo
Posted: Sunday, August 27, 2017 10:42 AM
Joined: 7/16/2017
Posts: 6


Hi Jim I love your story!! Yes I have been to Sardegna once, it is one of the most beautiful places in the world. I am from Rome. I was born and grew up there for 30 years then I came to US -to California. My life in Rome was great, we lived near the Old Appian Way, one of the oldest street in Italy and my Dad was a professional motorcycle racer. I came to US because while in Italy I had everything materially, I thought the hardship of adventuring in a different country that of course I liked, would be my spiritual path. Everything comes in duality and while at some moments I think that is the greatest thing I did , it is also a source of sorrow but I know it is up to me and which way I decide to look at things, but sometime I don't have that luxury and the negative synopses of the brain take over

Thank you so much for your advice. I would love to meet you and Cristina. My challenge is in this case that when I see or feel so much pain it is hard to give myself permission to do something fun or silly because it crashes with the reality of something so awful to experience but I agree with you that is the only way if I want to find some balance.

Thank you again - Antonella

 


Avigo
Posted: Sunday, August 27, 2017 10:46 AM
Joined: 7/16/2017
Posts: 6


Thank you jfkoc. Thank you so much for your kindness!
Jo C.
Posted: Monday, August 28, 2017 9:19 AM
Joined: 12/9/2011
Posts: 11602


Caldo benvenuto, Avigo.  I am truly sorry for what is happening and yes; it is a difficult journey and one in which we learn as we go along.  This must be especially difficult for you with your parents such a long distance away.

My mother had FrontoTemporal Dementia which causes severe behaviors and delusional thinking and at the same time, my step-father had Alzheimer's Disease; thankfully, his behaviors were calmer.

I have had similar behaviorally driven experiences with my own dear mother who was by the way also Italian, and when she began to have extremely negative behaviors and false beliefs which are actually "delusions," it was such a difficult thing to process.  Their delusions are their reality and we cannot talk them out of it.  We must enter their world thinking as they can no longer process the world of reality.

What we learn is that our Loved One (LO) is not doing this with malice, even though it may seem so; the behaviors are caused by the damage to the brain from dementia.  This is especially so when the damage is occuring in the FrontoTemporal Lobe of the brain.   No matter the cause, it is extremely difficult to experience and can cause feelings of grief and even upset in those trying to provide care.

You are not alone.  There are many here on this Message Board who understand.  I would like to give you a link to a good writing you can find free of charge online and it explains a lot about dementia.  It is, "Understanding the Dementia Experience," by Jennifer Ghent-Fuller at: http://smashwords.com/books/view/210580

I understand your heartache and the emotions and stress you must be feeling.  I too had such feelings and sometimes I would lie awake at night thinking and thinking and wondering what it was I was not doing to make things better.    What I did not realize at the time was that there was nothing that was going to make things better; it was just going to be about being able to do what one can do under the circumstances with the challenges at hand.

Sometimes the circumstances defy our interventions; but we can still provide our love and oversight to ensure care is being provided.  By the way, in time, the behaviors your mother is exhibiting will eventually pass and she will become calm once again.  Though this is the longest phase of the disease for some, that is the way dementia dynamics usually progress in such situations.  Still; we feel our grief at the losses that continue to occur.

I too live in Southern California.  Quite by accident, I found my place of peace.  One day, when my mother was particularly dreadfully challenging, and a care aide was present, I needed to get myself away.   I found myself at the ocean, parked right up against the sand. 

Suddenly, I began to feel my shoulders coming back down in their rightful place as I smelled the wonderful smell of the ocean; I felt the soft breeze against my face, and tasted the salt on my lips.  As I watched the gulls playing on currents of air, peace began to enter.  This is where I went each time I needed renewal.   Thankfully it was just a short drive away.

I also would like to provide you with the phone number of the Helpline for the Alzheimer's Association at (800) 272-3900.  If you call, please ask to be transferred to a Care Consultant. Consultants are highly educated Social Workers who specialize in dementia and they are awesome in their support and information.  There is no fee for their service.  One can call as often as one needs to and just share and vent feelings.

You have come online first time to the Forum titled, "Musings."  Many come here to write and communicate to one another; very nice place.  I would also invite you to write on the "Caregivers" Forum as you will get much feedback from others who are currently caring for their parents in very similar circumstances and there is much experiential wisdom to be gained from reading what they share.

You are a wonderful and loving person, Antonella; your parents have been blessed with such a daughter.

Please do know we will be thinking of you and we truly do care.

J.


Gene9999
Posted: Monday, August 28, 2017 11:20 AM
Joined: 8/18/2017
Posts: 31


Avigo, lots of great advice here, and I'll just add two pieces of my own. 

1.  As several have already mentioned, what's happening is not your fault - its a manifestation of the disease.  Some here say you should practice forgiving yourself.  I disagree in this because you did nothing wrong - there is nothing to forgive.  I suggest, instead, that you just keep reminding yourself that, when your parents do something out of character, its really not them but the disease.  You wouldn't feel guilty if a loved suffered from cancer, and you shouldn't now - its not you - its not them - its the disease!  Concentrate, instead, on helping ensure they have adequate care, and, in your visits to them and their world, being a calm and reassuring presence.  Take pleasure in bringing a smile to their face, or in relieving some anxiety they're experiencing.  And don't ever blame yourself!

2.  Recognize that, for you to be able to help them most effectively, you have to take care of yourself - first.  Getting enough sleep, the right things to eat, exercise, doing things you enjoy, that engage your mind - all these things are important, not only to you, but to your parent's well-being also.  Pace yourself!  It takes a lot of mental alertness to care for your loved ones with dementia - to pick up on small things that they can no longer tell you about or understand; to listen to, not only their words - because, overtime, the words will often mean little, but to their tone, delivery, and emotional content - that's where the information will be, and you need to be rested and alert to be able to catch every nuance - and to act when required.  Again, you can't best take care of them if you don't, first, take care of yourself.  This isn't selfishness on your part, but, rather, your responsibility.


BW daughter
Posted: Tuesday, August 29, 2017 3:04 PM
Joined: 8/28/2017
Posts: 14


Hi there - I feel the same way - I don't know what to do either since bringing my mom (who has dementia and is currently suicidal) from NY to CA is difficult, but the biggest concern is putting her into an environment that is unknown to her (and me).  Although I don't live in another country, I have similar challenges in that I am working full time at a demanding profession, my husband is also working and I have a child.  One thing to think about, like the others suggested here, is to remember to stay positive.  I have been crying so much, and feeling so sad and emotional about the whole situation, but I have to remember that my mom was a positive and good person, and the disease is something that no one wants.  Sometimes you are not the best person to care for your parents needs.  Is it possible to hire a full time caretaker in their home and when you go visit, you can bring the happiness and joy to them, and not do the day to day tasks?  I am struggling with this as well as I navigate home care options for my mom in CA and realize that her current caretaker in NY is in the best position (and has the strongest relationship with her, even more so than me) to care for her.  When the time comes and she is in a nursing facility, I don't know if it will matter so much who is caring for her.  I want to celebrate the memory of her, and not the decline and suffering she is going through with this disease.  I hope find a way to feel happiness despite the pain.  I am telling this to myself too and I know it will be a daily reminder because I am struggling with the same pain.
EmancipatedToes
Posted: Tuesday, August 29, 2017 3:55 PM
Joined: 4/25/2017
Posts: 104


BW- I just want to share with you something that I have started doing to help keep me positive when it feels like the walls are crumbling in around me. I started keeping a gratitude journal. Everyday I take a moment to write down 3-5 things that I am grateful for or that have made me smile that day. I try not to have too many repeats on the list. Sometimes I struggle to come up with a lot, other days I have way more than 5. This gratitude journal has helped me to keep my eyes on the good in life, so I don't get swallowed up by the bad/hard stuff. When I'm sitting on my pity pot, I can see all the good things I do have going for me. And usually that makes the bad less horrible. It is crazy to  me how much of a shift there has been in my outlook by consistently doing this. This has allowed me to find happiness through the pain.
BW daughter
Posted: Wednesday, August 30, 2017 12:42 PM
Joined: 8/28/2017
Posts: 14


EmancipatedToes that's a great idea  Thank you!
BlueSkies
Posted: Thursday, August 31, 2017 6:24 AM
Joined: 2/24/2016
Posts: 1096


Aviago, you have gotten a lot of wonderful advice.  I would only add that you spend as much time outside in nature as you can.  It has a very healing effect.  Try a walk in a park.  Maybe a bike ride or even just sitting on your back porch listening to all the sounds.  Take nature breaks through out the day and remember to take deep cleansing breaths.  You are doing the best you can.  That's all you can do.  Hang in there and keep posting.  You have support here.

EmancipatedToes, wonderful suggestion!  I do the same thing.  It has been very helpful for me as well.  


kellly
Posted: Friday, September 22, 2017 10:25 AM
Joined: 6/12/2015
Posts: 1131


Avigo, as much as I hate to say it, I think the fact that you tried so hard and met so much resistance to everything you tried is .... perfectly NORMAL. This seems to be a disease with no upside for people who are trying to be helpful and supportive. Frustration, sadness, feelings of hopelessness are all normal. Guilt because somehow you think YOU have failed somehow ... but you haven't. It's just an impossible situation and it seems like the only way people who are surviving being in this situation are those who have found their own solutions to dealing with THEMSELVES through it.

I have a lot of feelings I've just turned away from in trying to cope with taking care of my ex-husband for the past 3 years as his disease progressed. He is currently hospitalized from not being able to care for himself when I am at work (which I need so that I don't lose my house where we lived). He is due to be moved into a memory care facility and I am finding for the first time in a long, long time that I am able to even acknowledge that I've had feelings I've squashed throughout this past 3 years just to survive it and deal with whatever came at me. Grief is NORMAL. Sadness is NORMAL. It's not comfortable at all but it is perfectly human and perfectly normal. The situations we find ourselves in are crushing, heartbreaking and devastating to the human spirit. That INCLUDES US, not just the person with dementia. It crushes us, too.


Jim Broede
Posted: Sunday, September 24, 2017 6:12 AM
Joined: 12/22/2011
Posts: 5462


The impossible becomes possible. If you wait and see. You might well reflect. Years later. That you learned to take care of yourself. You survived. And you performed the impossible. Or what at the time seemed impossible. By taking life one day at a time. Maybe even one moment at a time. The collective moments add up. They often tell a story of success. If for no other reason than you came out of it a better human being. With an understanding of the profound intricacies of life. Keep the faith. --Jim

 


sharon11daugherty
Posted: Tuesday, September 26, 2017 7:25 PM
Joined: 8/6/2015
Posts: 1736


OOh...... Jim, that was good. In fact, great!  Looking back, it was impossible .

But here we are, enjoying and encouraging one another ..still.

Life is a wonderful adventure.  Blessings, sharon