Sink or Swim Time

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Yep. I am still in a bit of a funk. I am fully aware of my melancholy, yet I just can’t seem to pull myself into a brighter mood. There always seems to be something going wrong or something getting broken, misplaced or needing to be done (house painted, porch replaced, etc.). I swear, sometimes I think there really is a dark cloud that lives over me. I could really use a ray of sunshine. Not just for a moment, but for an extended period.  It is a never ending cycle and I just need a break. A break from decisions, from work, from being a “single” parent, from worrying about Jim and his future. While I say this, a tiny voice is on repeat: BREAK? WHY SHOULD YOU GET A BREAK? YOU HAVENT EVEN GOTTEN TO THE REALLY HARD PART YET!

Yep, I know what is headed our way and I sometimes wonder if that makes everything personified. Even so, I am desperate to raise the children in a positive environment. Yet, I am not sure there is a lot of positive vibes floating around when I am such a grump. I know there are some people who follow our story who have lost loved ones to something other than Alzheimer’s. I think when you lose a loved one, it is a universal understanding and bond that is formed with others that have gone through the same pain. But there is something about Alzheimer’s Disease that seems to be a little crueler. I do not, in any way, mean to disrespect those that have lost someone to cancer or any other sickness. It all hurts. It all makes you lonely and sad and the loss itself is the same. But I think the costs associated with the long term care, the frustrations of “babysitting” your spouse or your parent (or sibling) for such an extended period of time, the pure hopelessness felt every time you visit the doctor and there is no treatment plan therefore no hope, the mourning that is done day in and day out and then the overwhelming lack of time to mourn as you are embedded in the routine of worry, exasperation and financial struggles that can ruin your family forever. I realized just a few days ago that part of my problem was the fact I need time to let go of Jim and to lament the loss of our marriage, our family, our dreams, our relationship and come up with a plan to help the children do the same. But I don’t have time. I am not allowed or able to take the breather that usually comes with the loss of a spouse. Because I haven’t actually lost him. He is right here. Playing tennis. Eating dinner. Walking the dog. But he isn’t. He is so not here. And I am so not able to truly allow myself to let him go. So here I am, treading water, wondering how long I can keep it up.

I need help. Help fighting this war. I need to know that there is something better coming. My husband is dying from a disease that has no cure and no real treatments. It runs in his family. I am asking EVERYONE to help us. What can you do? You can write your Congressperson. Don’t ask them for more money for Alzheimer’s research, DEMAND it. Demand they listen.  Here is a link to a previous post about why you should help us advocate. Please ask them to support the Alzheimer’s Accountability Act. For more information click here. Then follow up with them and let them know you are paying attention!

When I follow the news and listen or read about proposed spending on things that I just don’t feel are as important as finding a cure for a disease that has been around over a hundred years and yet we are no closer to keeping someone afflicted alive longer or providing a way to cure it or prevent it all together, I just want to scream. Not only are we not providing what is needed for the patients, we are doing huge injustices each and every day to caregivers. Caregivers are getting worn out, used up and kicked to the curb over and over again. Each person who is responsible for an Alzheimer’s patient, must not only figure out finances for care and lost wages, actual care to be provided, often times losing their own jobs, and they must try to navigate through mounds of paperwork and technical terminology to make sure every “i” is doted and “t” crossed so they MIGHT get some sort of help. It is a disgrace how much burden is added to people who are struggling to come to terms with the fact that someone they love so dearly is dying.  Then, to add salt to the wound,  they are forced to prove they can’t pay for care or told they did something wrong and must re-submit the same paperwork they have already submitted 2 times or they must spend down the retirement they need to survive themselves in order to get help with care for their loved one. IT IS INSANE HOW THIS SYSTEM IS SO MESSED UP!!! None of this process makes any sense and yet, here we are, The United States, the leader of the free world…..definitely NOT a leader in the fight against Alzheimer’s Disease. Why? Can someone please explain to me why this isn’t more of an urgency and why we are having to fight so hard to be heard? Maybe then I can relax and I can have faith that things will be better for Frances and Brad.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (14)

14 Responses to “Sink or Swim Time”

  1. Lisa says:

    You ask some good questions…. I would add another why. Why don’t the members of the medical community…specifically, those who are the “director” of a memory care unit… know more about dementia? My mom nearly died in a memory care unit from neglect. Why aren’t physicians trained that some of the dementia patients don’t remember that they were injured 30 minutes ago and don’t feel the pain. I could go on and on. On a positive note, I participated in the walk on Saturday. It was encouraging to see so many people becoming involved in this fight. We have to be vocal about this. The lives of our loved ones – and the caregivers – are at stake.

  2. Shirley says:

    karen, right there with you! We have a sitter coming in afternoons (my parents are paying for it) and were told to take Wayne off All Alz meds since they were outrageously expensive and for mild to moderate and we are past those stages! Hard blow to have someone verbalize what we already know! Not sure what lies ahead since this disease is incredibly unpredictable! Praying for you and for all those in our boat!!

  3. Chris G says:

    Continued prayers for you and your children. I will follow your links.

  4. Linda says:

    hi from jax nc…my brother’s wife Wanda…finally lost her ten year battle…fortunately I got to be there when she received those well deserved wings….Unfortunately I learned that even though Skip had ten years…and five of silence that there is still grieving…he thought that when the time came he would be prepared…but nothing has prepared him for that…Karen…the house will be there….the porch might be there…but the silence is deafening…no more oxygen pump sounds…no more anything….try to enjoy just looking at him…holding his hand…just family doing nothing but sitting on the couch…what is lost can never be reclaimed…it will all be there when he I gone…and whatever little bit is left will be heartbreakingly missed….meant with hugs from NC

  5. I finally got my house painted then had to have the house leveled, one car has a flat and the other is almost out of gas, I am on a walker but my children pushed me in a wheel chair Saturday for the walk. I more than reached my goal of $2,000.00. Joe is in his 11th. year, I am paying for all his care living on a limited budget but through it all yesterdays visit was good. Joe told me over and over “I love you to pieces”. Karen I am ashamed to write about the dark place I was in in August. I came out finally, but the fear is ever present and I have no way to escape it. Constant praying is the only sunshine in our lives.

  6. Sherri Williams says:

    Oh Karen I know how hard it is,I am there too. I don’t want to turn loose yet I have already lost the man I fell in love with and married. He looks the same but he is not the same. And as much as some tell you to cherish the time you can’t for all the other things that get in the way. Congress doesn’t understand because they don’t have the financial worries that we do. They have resources that we don’t. They get to take that break and step away to rejuvenate that we can’t afford. Think about it. They aren’t fighting to keep their homes, their lifestyles, or to get help with their loved one. The disease is cruel enough but a lack of resources, financial included, is the salt to the wound. I have faith that one day that those that don’t help will understand and that God will grace the caretakers with peace and His blessings. Chin up girl. Grab whatever moments you can of time with Jim, time with the kids, or time to yourself even if it’s just a walk to drink the fall colors. We have no choice but to learn to appreciate the simple things (free) things of life. Wish I was close enough to take you out for a cup of coffee.

  7. Nancy says:

    Oh my gosh Karen, your words are my thoughts exactly. No one understands, even if they have lost a loved one, unless they are caring for a alz/dementia patient. It is so lonely, so sad, so tiring, so stressful and the list goes on and on. Caring for my husband while raising 2 teenage boys and working full time to keep up, well… I’m not keeping up. It is beyond hard to manage this life. I truly appreciate your honesty and your heart. Look forward to your blog every month. Thank you for your continued fight.

  8. Ann says:

    Great post, Karen — it seems absolutely ridiculous that the government has not yet recognized the magnitude of this issue. I’m not a mathematician by any means, but $500m on research vs $200b on care… seems pretty simple.

    After meeting with the legislative aides to my representatives in DC last month, I have vowed to pester the living daylights out of their offices until they’re sick and tired of hearing from me.

    Sending you lots of love and prayers,
    Ann

  9. Andrea Spencer says:

    It all really stinks!

  10. Sandy says:

    Thank you Karen for your posts, the subject matter always seems to coincide with what my family is currently going through. Just last week we moved my mom to a memory care facility, one day before my parents 50th wedding anniversary. Sadly the move had to be done, the care my mom needed was more then we could provide. Yes, the cost is pretty high and unless we spend down most of what my parents have saved for retirement there will be no state aid. It will probably take less then a year to spend wheat took them many many years to save. Keep up the fight my friend!

  11. Jeri says:

    I’m like the rest of you. I don’t understand why the “powers that be” don’t see the urgency in this. But I’m going to make copies of the “numbers”-money wise and affected people numbers and I’m going to write a letter and “BEG” for help!!!? I’m sure out of all the people in our government, there has to be many who have been touched by Alzheimers….wouldn’t you think? But people need to be more educated on EXACTLY what Alzheimers means to the ones diagnosed and their families. If they understood all the struggles, then surely they would offer MUCH MORE funding. Surely.

  12. joan says:

    I feel the same about this disease.There are no new drugs since my grandmother died with it 20 years ago.I
    believe its because its an old persons disease.There was a couple speaking out about it on Dr Oz today.
    My aunt who cared for her said its the worst of diseases and watching my 59 year old husband decline I agree.There are no easy solutions to this.

  13. Helen Grimes says:

    There are beautiful new memory care facilities being built everywhere in my area. So if a family can somehow come up with the $4,500 and up a month, their loved one can be moved there and usually receive excellent care. What really is shameful to me is that everyone who can’t afford that often have no where to turn except to hopefully get them on Medicaid and place them in a nursing home and usually these aren’t anything like the beautiful and well maintained and staffed memory care communities. How can we take care of so many illegal aliens in this country and yet can’t take of these precious souls with dementia/Alzheimer’s unless they have a huge bankroll. The last two years of my Mother’s care cost over $200,000.

  14. Mary gold says:

    So sorry you are at this crummy time in your journey.
    It must be so incredibly difficult where your children are so young ! Sad too for Jim who is missing out on this & you unable to enjoy the children’s lives together.
    Three yrs ago I had my mom in law with dementia living with us. Our kids are grown but it was like having a child again as I had to get *sitters* to be with her when we went out. I got along with her before dementia but her personality was totally different with the illness & she really dislike me for that year. I think she saw me a *in charge* & resented that. But she did lose ground right before our eyes. She finally got aplacement at a *home* where her husband was & had a *better* year there in his company, & she has passed now at 81 but was afflicted for 10 yrs.
    God bless you & your family !

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