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Conflict between patients and care partners
Iris L.
Posted: Wednesday, February 4, 2015 2:05 PM
Joined: 12/15/2011
Posts: 18513


Patients are in a difficult position. We are confronted with a very serious illness.

We need encouragement and hope. We need constructive actions to take in order to take control of our lives.

The last thing we need is negativity and hopelessness from care partners.

Iris L.



llee08032
Posted: Thursday, February 5, 2015 5:51 AM
Joined: 5/20/2014
Posts: 4408


I have stopped responding to CG posts because somehow I seem to put my foot in my mouth or say the wrong thing. It just hasn't gone well for me with some of the back and forth tug of wars. Advice is asked for then it is not received well and feelings get hurt. Some of the CG's with newly diagnosed loved one's seem to come to our board first. Maybe out of curiousity. Nevertheless, they are emotionally raw with the news of a new dx for their loved one.

On the other hand, it is very difficult for us to hear about the doom and gloom, negatives, progression, decline and what may be our own eventual reality someday. Something upset me the other day involving a statement about early onset progressing faster. Hearing certain things can be frightening for us on the patient boards. I think there are times when we innocently or unknowingly step on each others toes and feelings. I just do not like some of the back and forth debates and feeling obliged to defend my position or opinion so I opt out. If it annoys me or drains me I cannot afford the time and focus. I do feel empathy and compassion for the caregivers however, at this time I have to selectively take care of myself and not dwell into the territory of progression and worsening of symptoms. Self preservation has to come first for us.

I think a brief welcome and a gentle swaying over to the caregiver boards for new persons is an appropriate expectation and all that is required for those of us struggling with our own dx.

llee08032
Posted: Thursday, February 5, 2015 6:34 AM
Joined: 5/20/2014
Posts: 4408


Patients are in a difficult position. We are confronted with a very serious illness.

We need encouragement and hope. We need constructive actions to take in order to take control of our lives.

The last thing we need is negativity and hopelessness from care partners.


((((Iris))))

Myriam
Posted: Friday, February 6, 2015 5:16 PM
Joined: 12/6/2011
Posts: 3326


In many ways, I'm glad I don't have a caregiver, though I will get one when I need it. I've remained in the early stage since 2009 and believe it's because I've had the responsibility of taking care of myself instead of giving my power to another person. I recently moved into an apartment building for persons over the age of 58. After moving in, to my delight I learned the building is also considered an assisted living facility, so when the time comes that I need help, it is there. The management is wonderful and there is a lake, park and community center across the street. My dogs, Joe Cocker and Zoe, love it here.

I continue to be very involved in my community on board of directors, as a speaker, an advocate in the state legislature and Congress, and the many opportunities available to persons with dementia, such as the weekly Zoo Walk, Alzheimer's cafes, support groups, bi-monthly 2-3 miles Out and About walks in different areas of Seattle, bi-monthly art museum discussions, and much more. Was appointed to the Alzheimer's Disease Working Group for the state of WA to develop the State's Alzheimer's Plan, etc.

Please consider getting involved in your community, particularly if you are in the early stage by contacting your Alzheimer's Association chapter.




llee08032
Posted: Saturday, February 7, 2015 9:13 AM
Joined: 5/20/2014
Posts: 4408


Myriam,

So good to see and hear from you! We miss your not coming by as often but can see you are very busy to say the least.

In many ways, I'm glad I don't have a caregiver, though I will get one when I need it. I've remained in the early stage since 2009 and believe it's because I've had the responsibility of taking care of myself instead of giving my power to another person.

This makes so much sense to me. It does seem the less responsibility and the less one does perhaps the faster the progression. I'm glad I don't have a caregiver and especially glad there is no need for one yet. 6 years in the early stage is remarkable. Myriam, I think this is also due to all the important work for our cause that you have yet to do. Thank you for all the work you are doing for all of us!

alz+
Posted: Monday, February 9, 2015 8:43 PM
Joined: 9/12/2013
Posts: 3608


My 2 cents:

The trajectory of dementia can not be ascribed to anything. Some people go slowly, some are gone in a year. People who are doing well can believe it is because of exercise, diet, patches or pills, or what ever they have been doing to treat themselves. I do not doubt these medications do have a profound effect on many of us. I suspect some of us do really well without those medications and some of us have bad reactions to those medication, too.

My sense is I can not control much of this illness and have cut loose the internal pressure to DO SOME THING to alter the course. I started to fear days when I was not well enough to go to exercise class or even walk. When I was sick recently unable to eat and in lots of pain there was this pressure to not rest but get back at it...which caused more problems.

I am very happy for people who take a medication and believe it is holding back the progress of their illness. At this point in my journey getting to calm more often is most important to me.

I still feel a happy home life is essential for any illness that will end my life, but especially important with dementia because becoming increasingly dependent on the help of others brings so much anxiety. Maybe living alone keeps one sharper and independent longer - at this point that is not possible for me. I can sometimes not put peanut butter on a piece of bread. The verbal and writing skills remain and can attribute that only to what parts of my brain are functioning.

The living situation which transfers to assisted living sure seems ideal.

Right now posting is inducing vertigo so will close here.

What ever works for anyone, or what ever they think works...This response was going to be about care giving as it relates to Alz and I forgot that until now.


Mimi S.
Posted: Monday, February 9, 2015 9:57 PM
Joined: 11/29/2011
Posts: 7027


Myriam,

It is great to hear from you.

Seattle is a dream place to live and most larger communities offer much more support for those of us who are still in Early Stage.

However, those of us who live in the boondocks must figure out how to keep ourselves on track socially. The other parts of the Best Practices we can do easily wherever we live.

Do Best Practices make a difference? Those of us with the disease, who've been around a while, testify that they do. There is more and more in the literature that says they do.

Not all agree. It is true, the rate of decline for those of us in Early Stage varies tremendously. The question to ask is why? We need a very large study to answer that question.

Meanwhile, those of us who live by the Best Practices will continue to do so and try to get others to do so. If they are not responsible for our still being in this stage for years, we haven't lost anything. And most likely we are much healthier because of our lifestyle.

But back to Myriam. It's so good to read your post. And do say hello to Bob when you see him. I miss him.

alz+
Posted: Friday, February 13, 2015 4:26 PM
Joined: 9/12/2013
Posts: 3608


Exercise changes every brain for the better. Muscles were made to be used and strong.
saw a PBS fund raising show called Backwards Aging. The movements of the exercise program lit me up, wanted the dvd so I could do it at home. If you can find info on this book and dvd you might find it encouraging.

I have maybe 6 dvd's that I really wanted and thought I could do, I have yet to play any more than once.

I hope my comments on not being sure there is anything that will change the course were not taken as that Best Practices do not work. They are basics to good health no matter what.

Being in nature is very helpful. I rode along to a place where husband walks our dog today and sat in shade studying an old tree trunk. Made me feel better, good enough to throw sheets into washing machine.

I am at a tricky stage where change and stimulation overload me quickly and staying home makes me bored and agitated. Tomorrow we are driving on a 5 lane hwy so I can spend 2 nights at my son's and see my grand children. I know being in a different house with noise and people coming and going will make me edgy. I want so much to go, and fear being disruptive.

My intentions on board are to suggest we each have to find our own way and if we do the best we can to follow Best Practices but still find our brains changing to not hold oneself at fault.

I can hold myself to Unreasonably high standards, find myself worried I have not done "enough" to slow progression, or to make my children comfortable, or being unwilling to give people a pass for not getting it.

so much seems to be against my will, or not in my interests. Then again, I think how lucky I am in so many respects. My daughter does get it, she is a natural. She knows how much she means to every one for her peace making. If I could live with her I would be happy but she would be drained. A paid caregiver does not operate under the burden of the past or personal gain and loss.

Being left alone now is dangerous for me. There comes a point in this illness when being alone makes a person more anxious (which equals loss of cognitive abilities). I am close to that. No, I am in that stage. I am very slow thinking and talking, hurt doing dishes or cleaning up.

Do the best you can and when you can't do it anymore don't get on yourself about it. That is what I mean to convey. Love you all so much.

llee08032
Posted: Saturday, February 14, 2015 7:18 AM
Joined: 5/20/2014
Posts: 4408




((((alz+)))))

Love you too!

Have a safe trip and enjoy son and grandchildren,,,

you'll do fine!

Iris L.
Posted: Saturday, February 14, 2015 2:52 PM
Joined: 12/15/2011
Posts: 18513


Well said, Alz+. We have to make lemonade out of the lemons that we have. We have to do the best we can do, and then leave the rest to our Higher Power.

Do not obsess over the car trip. Have things to occupy your mind, and when you arrive at your destination, enjoy your son and grandchildren.

P.S. Forget about cooking and doing dishes!

Iris L.


alz+
Posted: Monday, February 16, 2015 7:19 AM
Joined: 9/12/2013
Posts: 3608


Have things to occupy your mind, and when you arrive at your destination, enjoy your son and grandchildren.

P.S. Forget about cooking and doing dishes!

Iris L.


I had a wonderful day with my grand kids. Grand son is 5 and Grand daughter is 3. Because I live far away from them and see them so seldom I worried we would never bond, but we did.

The kids got my sense of humor, they knew I was someone they could trust and who loved them int he way a Grandma can love. I am sitting in back seat of car all the time and was able to go to church at night and travel the 45 minutes without being frightened! Maybe that is some cosmic advice, don't look out at a fast paced world. Take the Bingo card reader position when the world goes to too fast! I have pretty much forgotten cooking! I can do dishes but not silverware, end up with cuts or pokes.


llee08032
Posted: Thursday, April 23, 2015 6:17 AM
Joined: 5/20/2014
Posts: 4408


I just landed here in looking back to see how many times we've had these discussions about CG posts. I think there were others before this also. Some of the topics are unnerving such as "how long, when is it time for a facility and over and over with the aggressive behaviors. It's too much!
alz+
Posted: Thursday, April 23, 2015 7:43 AM
Joined: 9/12/2013
Posts: 3608


llee08032 wrote:
I just landed here in looking back to see how many times we've had these discussions about CG posts. I think there were others before this also. Some of the topics are unnerving such as "how long, when is it time for a facility and over and over with the aggressive behaviors. It's too much!


Llee - I always look forward to your posts The heightened sensitivity to other people's posts affected me too, only recently has that changed for me.

It seems there is an aspect of anxiety that is more pronounced in EOAD which may be part of our painful reactions. Also it takes most of us awhile to accept our mortality and prospects. When we are told "Alzheimer's" and there is no cure at the moment there can be a sense of desperation to find something to slow this train down, in fact a need to slow the WORLD down.

When we accept we can slow OUR OWN world down only, that we do have to fit into modern society by altering ourselves, and become willing to do that, it eases the frustration quite a bit. I look to Paul's posts to know we can go through this with grace if we set our hearts to that.

Those long arguments on CG boards used to raise my indignation. But now I hear those people who are drowning in responsibility, anger, frustration and longing for some thing else and realize the idea of expecting one person, often abandoned in the care of the person with dementia, to do more than they can or want is fruitless and harmful to all concerned. One CG to one patient is asking too much.

They need days off, good sleep, free time, and to continue their own lives. I needed to accept that it was true and healthy, on the boards and in my own home. I know we al come to our own peace in our own ways.

My efforts were to encourage the care givers to change the rules, to lay down the law when needed with other family members and friends to do some small share of the work and to give them time off. Small contributions add up.

One person wrote that she called the local VFW where her husband used to hang out and yelled at the men sitting in the bar, "Hey! You've got a man down over here! You do not abandon a fallen soldier! You guys start showing up and helping him!"

and they did, and the man with dementia got his friends back, the friends had a good time, the caregiver got some action to help her.

The CGs need to go rogue, do what needs to be done to get more help instead of complaining and expecting the patient to change or die. Stop being polite about it, tell the kids and grandkids any inheritance will go to those who earned it by helping. People do not know that a weekly grocery trip alone might help the CG enough to make a difference, or to do the shopping for the CG, or come do a spring cleaning, or repaint a fence. If the CG appears upset and hostile to potential helpers they are unlikely to find any regular volunteers. That is their problem, getting reinforcements to help them, not the "bad patient."

People doing community service might form a labor pool. retired nurses, people at your country club or service group could get a letter asking for help. Specific help. Boy and girl scouts and so on.

My Dad loved golf, he still got a kick out of putting. I got him in the swimming pool when I could, sat in a car parked by the beach and just smelled the air and felt the wind. Those days I loved and helped my Mom enough to tip the scales in a good way for all of us.

Those people wanting to know when the disease ends are not bad for asking, I even found an online calculator to figure it out for myself (it kept coming back 5 years even when I altered some of my input). It does not mean they want us to die, they are probably figuring out how long their money and energy will last which to know.

When I understood the distress, and understood the One Person mode of ALZ care is a set up for failure, I became willing to accept other people coming into my home to help me out and not put it all on my husband or children - that the anguish subsided.

Even with this diagnosis there is still a lot expected of me. A worthy goal for me now is to make it easier on every one in my own life.

the ALZ organizations can help the lost cgs reinvent their own plans and lives.

A message board and call center is good, but someone showing up is a lot better.

love and courage


Iris L.
Posted: Thursday, April 23, 2015 7:33 PM
Joined: 12/15/2011
Posts: 18513


Many new caregivers are in anguish. Inadvertently, their situations have come to a crisis point, and it becomes overwhelming.


We patients should aim not to reach a crisis point, but anticipate needs and make preparations. We patients need to be proactive about our own care. I don't want hysteria to be part of my care.

Iris L.

llee08032
Posted: Friday, April 24, 2015 9:23 AM
Joined: 5/20/2014
Posts: 4408


alz+ your sensitivity and insight into the plight of the CG is quite astounding to say the least! Please post your recent post on the CG board if you have not already. Surely some of your amazing and thought provoking post should be included in your book...
Iris L.
Posted: Friday, April 24, 2015 2:24 PM
Joined: 12/15/2011
Posts: 18513


llee08032 wrote:
alz+ your sensitivity and insight into the plight of the CG is quite astounding to say the least!

I wrote this thread concerning the plight of the patient. The caregivers have much support. We patients have no sensitivity nor insight into our plight.

Iris L.

Mimi S.
Posted: Saturday, April 25, 2015 8:41 AM
Joined: 11/29/2011
Posts: 7027


Darn, I half wrote a message, went to check something and it disappeared.

Those who would like a private group with membership restricted to folks with Younger Onset, can form their own private group by going to 'groups' and hitting ' begin a private group.' I don't know how one gets the names in. One could call 1-800-272-3900 and ask to be walked through the process.

I'm not interested in being part of such a group, but those of you who resent caregivers writing on the Younger Onset Board could give it a try.

Iris L.
Posted: Saturday, April 25, 2015 2:10 PM
Joined: 12/15/2011
Posts: 18513


My thread is not about resenting caregivers posting on the YOAD board. I have said often, that I believe they should read and post on this board. My thread is about patients including myself, being exposed to negativity and discouragement.

Obviously, people can post what they want to post. But I am traveling this journey alone. I can't risk exposure to too much negativity, because I am prone to depression. I come to this board every morning because I need encouragement.

I am not the only patient who has expressed being uncomfortable with some of the caregiver posts. The response seems to be: Form your own group.

Wow.

I have gotten a tremendous amount of advice from being a member of this board. In fact, probably 99% of my advice has come from this board. My first advice, to stop using the stove, came from wonderful, caring caregivers. I appreciate the members here very much, both patients and caregivers. I feel sad today.

Iris L.

alz+
Posted: Saturday, April 25, 2015 7:10 PM
Joined: 9/12/2013
Posts: 3608


Iris L. wrote:
llee08032 wrote:
alz+ your sensitivity and insight into the plight of the CG is quite astounding to say the least!

I wrote this thread concerning the plight of the patient. The caregivers have much support. We patients have no sensitivity nor insight into our plight.

Iris L.


I hope the message came through that we as the ones with the illness (or in my case) are sometimes going to better our own situations by considering what those taking care of us are going through - if at all possible.

My husband is my sole CG and we fought over things a lot. I would mock him when he would claim to be tired out, or need time alone. He argued back. It was often ugly. The only way I found to get out of this was to acknowledge the inability for a man 10 years younger than I to have no other stimulation or interest than me me me. When I said I understand and yes I will try to get used to outside help he was able to get his footing and the arguing stopped.

Like sitting in back seat stopped my hysteria riding in cars instantly, so was this transformation in our lives.

I was CG to my Father for 10 years in past. I know what it is like, and it was not ever tragic, or combative or as difficult as some people are experiencing. To his wife, my Mom, he was exasperating. They could afford help we can not but we do have some free offers.

My radical notion is that if we do not buy into myth that WE can not change our behavior because we have a diagnosis. I understand some people do not even know they have the illness (my Dad), but I am super aware of it.

The truth is, most people are not cut out for this kind of transition, or to take on the role of CG alone. If I can encourage my husband to treat me differently, and he can ask of me ...... both our lives improve.

My friend who died this winter was caring for both her mother and father! Her Mom did not mind staying home, looking out the window, an occassional afternoon with a hired person, but her Dad was bored and hostile. He went into a place with art and has been really happy there. He apparently does not know his wife and daughter died.

I know my friend's attempt to do the impossible, the depression she developed, her unwillingness to get her own health taken care of ended her life early.

As to this board's divisions, I like to hear patients talk about what they figured out or did different than what doctors and mainstream orgs suggest is TRUTH.

Just because you have dementia does not mean you are unable to process another person sorrow and anger when they are overloaded. Many of us do. It helped me get my situation into a more equal and peaceful and loving state but it did feel as if I had forgotten how to be receptive, like I sometimes forget how to smile, and it took me over a YEAR to process my end of the problem.

Lower the stress and raise your cognition.


llee08032
Posted: Monday, April 27, 2015 10:32 AM
Joined: 5/20/2014
Posts: 4408


((((Iris)))))
Iris L.
Posted: Tuesday, April 28, 2015 11:51 AM
Joined: 12/15/2011
Posts: 18513


Don't slay the messenger! People don't want to admit the truth. There is an inevitable conflict between patients with dementia and the people around them, commonly called caregivers. Patients are urged to be positive and to focus on our strengths. Caregivers are negative and focus on deficits. Focusing on negativity will destroy a patient. Patients and caregivers need to be aware of this. It is unpleasant to think about, but it is the truth.

Thank you, Ilee, for the hug. I needed that.

Iris L.

Despera-termined
Posted: Tuesday, April 28, 2015 3:43 PM
Joined: 4/2/2015
Posts: 45


Praying for you Iris. (((Iris)))

One of my favorite verses in the Bible that I would give people and use myself is Phil.4:8

Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.

And the one right before it goes along with it.....

And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

God Bless You........



Paul Hornback
Posted: Tuesday, April 28, 2015 6:09 PM
Joined: 8/9/2013
Posts: 584


Despera, Phil 4:8 is one of my favorite verses as well. It is one of those that I have to remind myself of before I speak especially if I'm upset. I do slip up but I try to be very mindful of what that verse says and means.

Thanks for posting it and reminding us.

God Bless, Paul


alz+
Posted: Tuesday, April 28, 2015 6:27 PM
Joined: 9/12/2013
Posts: 3608


Iris L. wrote:
Many new caregivers are in anguish. Inadvertently, their situations have come to a crisis point, and it becomes overwhelming.


We patients should aim not to reach a crisis point, but anticipate needs and make preparations. We patients need to be proactive about our own care. I don't want hysteria to be part of my care.

Iris L.

((((everybody))))) !!!!!

Agree completely Iris. We patients can make some pretty accurate generalizations about what we will need and make the best plans.

Perhaps I should have posted my thoughts about ON CG board. My intent to was to share my shock and wonder at out of the blue an ability to stop dwelling on ME and put my CG's feelings into the picture, into my heart changed MY CARE to all I ever hoped for. If one has a lucid moment (what else to call it?) when we can step out of our suffering, anxiety, worry or need for control and show love - it is not going to hurt anyone. We can to different degrees add the energy we want to our relationships. I was certain it was all or nothing, they gave or they did not. I was wrong.

so my responses were to remind us our own energy affects those who care for us.

I am stunned by the transformation in my home life.

and in this vein, I felt good enough to walk with dog to corner when a 45 pound Labrador saw me and charged at 45 mph from a long way off. She is enthusiastic in her greetings, I braced, she did not cut a close corner but body slammed me into the gravel. I cried, my attentive dog was hunting squirrels. I got to my knees and dog came bag for second hello and down on wrists. Back in bed.

and I love you all and can feel your days when things are harder, I understand.


llee08032
Posted: Tuesday, April 28, 2015 9:25 PM
Joined: 5/20/2014
Posts: 4408


((((((Everybody)))))
llee08032
Posted: Tuesday, April 28, 2015 9:27 PM
Joined: 5/20/2014
Posts: 4408


Thank you, Ilee, for the hug. I needed that.

I know you did. ((((Iris)))))!

dayofhope
Posted: Sunday, May 3, 2015 7:28 AM
Joined: 12/6/2012
Posts: 1249


I would like to thank you all for this insightful conversation.
Tanya


Iris L.
Posted: Tuesday, May 5, 2015 10:47 PM
Joined: 12/15/2011
Posts: 18513


An example of the conflict between patient and caregiver:

Caregivers use the terms "sufferer" and "victim". Patients do not like these terms. This was discussed on a prior thread a while ago.

Question: Do the new members also find these terms demeaning?

How do you (patients) feel when caregivers use such terms?

Iris L.

Iris L.

goonky
Posted: Saturday, May 9, 2015 7:29 AM
Joined: 10/30/2012
Posts: 271


I realize this is an older post, but I just saw it because I rarely am on this thread. My dh has ftd. I have struggled often with being compassionate with dh. I think the first years after diagnosis I tried to share my feelings and struggles with him and tried to listen to his struggles. This did not work. He no longer could empathize with me and his feelings were mare reactive than contemplative. I have found that I needed to adjust. I had to find others to meet my needs for a friend, my husband is no longer able to be this for me. I found I could best meet his needs by living in the moment with him and keeping his life as calm as possible. I guess what I am trying to say is we are all adjusting to the new normal. None of us want to respond wrongly but we are all struggling with a life altering, long term illness. Emotions are on a roller coaster. Caregivers have a very hard roll. We are grieving as we are adjusting. Patients have a very hard roll, loosing abilities has to be frightening. We all need grace, wisdom and patients to get through this.