Hello, my name is Jessica.  Myself, my spouse and Dad are live-in caregivers for my Mom with young-onset, age 61, dx 2016.  I am here looking for some advice, assistance, help or anything that may help us better provide for my Mom!  Our very brief history: my immediate family has been touched by Alzheimer's three times since the early 1990s, I have been a live-in caregiver for each family member, and we are not unfamiliar with the illness.   My Mom retired from her highly stressful administration position last year and has yet to find a new purpose for living thus devastating her quality of life.  We have a very strong support system in our family, but Mom has always suffered from severe mental health issues and has separated herself from us for many many years.  Although we vacation together, spend holidays and BBQs together, Mom's presence over the last decade has been dwindeling and mostly non-existent as the illness and mental health have become too much to handle for her.  We chose to make some massive family decisions last year, such as selling of our family home (my Dad's house of over 40 years which he built), and completely downsized our family manufacturing business at the time of my Moms retirement, and the three of us moved in with my Mom.  The three of us caregivers have extremely long hours practically 7 days a week, just to barely make ends meet.  

So...my reason for seeking some advise or help is that we are not able to support my Mom during this transition period (and plan for tomorrow) well enough to make positive steps.  We are working our butts off to support my Mom in ALL ways,... EXCEPT her mental status.  AND WE NEED HELP!!!! My Dad's health is now being negatively affected.  

We have tried volunteering, de-hoarding the house, gardening, old interests, but we are not gaining any headway.  Due to the nature of my Mom's mental health she refuses mostly all  support, but we will keep trying!  If anyone has any ideas, stories, support connections, etc please share! 

Welcome to our world, Walterbirdri.  We're so glad you found us.

Do call our help line: 1-800-272-3900 Think about making it a conference call and ask to speak with a Care Consultant.  You have multiple problems to discuss.

Hi Jessica

Welcome to our world.  We're so glad you found us.

Do call our help line: 1-800-272-3900 Think about making it a conference call and ask to speak with a Care Consultant.  You have multiple problems to discuss.

You are someone who would be valuable here. You have an open heart and experience with caring for people with ALZ.

I am interested in YOUR stories about what went well and what didn't.

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Your Mom - if you could not hear what she is saying, what would you think she was communicating?

my recurring stress points are fear of ______. I recently had fight with my CGvr because I was hiding my broken heart, was afraid to feel what was there. I also learned PRETENDING is exhausting.

I may be wrong to generalize but I do think we can resolve some old problems, even with dementia. It does not take much to reach into most people's hearts. Loving eyes, relaxed posture, maybe feeding ducks or watching the clouds.

Anther common burden I hear from my friends here is our worry about being a burden. In almost anything I read in articles etc refers to people seeing their loved one with dementia = the person is dead and been replaced by some unwanted insufficient other.

That is the toxic premise maybe people diagnosed carry away with them, that they will become not only nothing with no mind (untrue) but a financial and emotional drain.

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when all else fails bring in the dog and do what the dog does.

please share in future.

alz+, I know that everyone's experience is different. I just wanted to say that in NO way to I view my mom as a burden. I get not everyone feels the same way I feel, but more than anything I want nothing but the best for her..and I think there are a lot of people who feel this way.

My experience is that I DO miss the way my mom used to be, BUT I love her soooo much, and I am glad that I get to help take care of her and be there for her. I get frustrated sometimes because I don't know how to reach her/help her. I get sad sometimes because I see her seeming to be very lost, and I can't seem to help her find her way back. I get frustrated at this damn disease a lot, but not at her. Sometimes I need to take little breaks, because my emotions get the most of me, and I don't want her to be upset too. Sometimes I need little breaks to clear my mind. But the breaks are NEVER EVER because she is a burden.

Often I don't know what to do. I always feel like I could have handled situations better. I will never not try though. I feel grateful that I get to be a support for her, and care for her. I really appreciate the insights I have gotten from people on this board in particular. I have learned things that are invaluable.

My husband was never a burden either. Was every day a joy? Certainly not but there were "unjoyous" days before illness came to call.

I never saw being by my husband's side anything other than where I wanted to be.

That said, when I no longer thought that my husband should be alone in our home I was able to have someone come in for several hours a couple of times a day. Not everyone has that and it must make things more difficult to never have a change no matter how short.

What I think caregivers do universally feel is the frustration of not being able to make things better and with the medical profession. We do feel covered up by the responsibility and we do get really physically and emotionally worn out.

It is understandable that each caregiver can do no more than their best and that some can provide more hands on than others for many reasons. When our best is not working we gritch. We come here not only for information and advice but to talk it out with others who know what  we are saying. Call it a vent, or gritching but I think it is simple validation that is fuel for the weary soul. 

This is very likely what you are reading and I am certain that the actual word burden is used along with the words anger and can't. Some other stuff gets said too. In addition we can throw a dandy pity party.

Please take what you read with the understanding that despite the moaning and groaning most of us are doing exactly what we want to be doing....staying close to someone we love. In addition we want to stay close to those of you here. We truly care ever so much.

XOX

the person who asked for help with her mom does not think of her mom as an unwelcome burden, and I did not feel that way with my father.

 if you read what people with dementia say, over and over again, "I don't want to be a burden" - the idea of it is breaking their hearts. 

We carry around with a diagnosis that we are destined to become this horrible tragic end of nothingness. 

I won't pretend this isn't very common.  This illness is presented 99% as a tragic horrific obliteration of identity. That attitude and expectation is toxic. That was not what she was asking about, but...

love and courage