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Ruth, life is so hard for you right now. Although our husbands have similar deficits I don't have the added responsibility of raising teenagers at the same time. I can only tell you to hang onto your sanity with both hands.

 

In our dementia support group we have been taught to anticipate what will send our partner off, so controlling light, loud noises etc, keeping regular mealtimes, shielding them from others agendas are all part of that anticipation. I wonder how you could set up your household to minimise stress?

 

Is there a finacial planner in one of the neighbourhood churches who coud help you maximise the money you have left? I know people here talk about getting free meds, getting help from churches etc with daycare plans. Perhaps there are still other avenues you haven't explored yet. I hate to see someone in such a desperate situation. Our kids are Captains in the Salvation Army and I know they help out in families with disabled kids so try your local Salvos as well.

 

I am just sending you (((hugs))) as that is all I can do.

 

Sue.

 

 

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Ruth:

 

as a survivor reading what you are going through gives me chills. It is amazing to see that you can still find breeze while what is going in your life, but ofcourse you are strong woman & God does not give more than you can handl though he does pushes person to limit sometimes.

 

Asha

 

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Ruth

We share the same name as it is my middle name. My mom's name was Ruth so I was named after her.

 

As I read through your blogs, I wondered "where do you turn?" Life has not been easy for you these past several years nor for your two daughters.

We were able to get help for my mother-in-law through the regional Senior Citizens agency with house cleaning, meals delivered, repair work to her house, and etc. I'm not sure where you live but it sounds like you could use an afternoon away from home during the week with care for your spouse.

Are these services available in your area? I'm just trying to find you some much needed help and respite.

 

You are in my thoughts.

 

Stephanie

 

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Hi Ruth, I am so sorry for what you are going through, I wish I could help but I live in Canada and I don't know what help is available for you in the states. I know one thing for sure, you need to do something for yourself. You will not be able to support your family much longer if you don't look after yourself. You seem to have great kids, maybe if you sit with them and tell them what you are going through, they might come up with solutions you have not thought of or that you didn't want to ask. I wish I was close to you and could help you. Have you thought of talking to your hubby's psychologist if he has one. Can you talk to your husband, would he understand that he is too demanding on family? I hope you can find a solution before you are done in. I wish you will find the help you need. Good luck and know that we are with you, in thoughts at least. Hugs to you.

 

Marie-Claire (mcd)

24 years survivor.

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Hey I really do appreciate the comments and suggestions to this blog. Thank you all. It is a great relief just to be able to express my feelings in a blog and not be made to feel bad for them.

 

"Where do you turn?" - that has been my question for some time. I think that we live in the wrong part of the country for one thing. The population of this area is so high as is the demand for assistance. Our assets are just over the limit for medicaid and that is the standard that most organizations use around here to determine eligability. Even for those who do qualify there is a three year waiting list for things as common as meals-on-wheels! My husband's medical is now handled by the VA. That is both good and bad. It helps financially but it is extremely impersonal. The doctors do not seem to remember him from one visit to the next even if it just a matter of a few weeks because there are so many people going through there. Then there is always a different person to contact for everything and some one else has to give a referal for each of them. I have been calling and visiting over there a lot lately trying to get some answers. My mother volunteers at her church for a few hours each week and it seems every time she is there she receives call from people looking for help. There are lot of folks in need and I am sure that many have greater needs than I do even. We had some people offer help from our church this past spring when Dick was so ill. Even when we were wondering from day to day if he would be alive the next many never actually did what they offered. I guess everyone is just too busy. So no, I do not know where to turn. It is this confusion which makes me feel stuck and helpless. I do know that we have made it this far. As Frances Nolan expressed in "A Tree Grows in Brooklyn" we will survive somehow someway we will survive.

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Ruth, living with someone with dementia is so different from what you and the girls have been used to. I am lucky I have picked up so much from the "classes" I go to at a dementia support group. They teach us how to live with the ups and downs of a dementia sufferers cycles and mood swings. It is up to us "mentally normal" folk to adjust. They can't.

 

For while a couple of years ago our son was in denial about his father's condition and wanted me to get him medications, counselling etc to help him "get better". But each brain cell lost can never be replaced and the condition is ongoing and retarding. It is so sad but we have to live with it, minute by minute, day by day. It just takes so much of my energy sometimes to do so.

 

I think you need to take the motto: "making the most of what you have". Because next month you will be mourning this months losses and so forth into the future. Kids and family members don't understand how much energy is involved in looking after this person we love so much. It is our primary focus and our life's work, and all else seems sometimes to be secondary. Hard for others to understand that.

 

 

I tell Trev all the time to make allowances, his Dad is doing the best he can with the brain he has. It is not his fault that the fog is getting thicker and he is losing his landmarks. It is such a frustrating disease for the sufferer, the caregiver and all involved in livng with the disease.

 

(((Hugs))) from Sue.

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I can only offer hugs and prayers as we live in Canada and things are different here as far as health care goes. It is the same here they keep putting you off on to the other guy and passing the buck. Just when you think you may have found some help or advice you are told you should see so and so who is either not available or does not exist..Perhaps the VA could find him some help or couselling..

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