Is living beyond dementia easier with money?

Dollar SignThe following is a comment posted privately to me on Facebook about my last post Living well, living better, or living beyond dementia?; ”

“Thank you!! I have heard so many negative comments about the whole “living well with dementia” campaign.  Maybe some people have money to do the things they did and are not restricted by their symptoms – I am not one of them,  I think people need to hear the good and the bad.  This life is NOT easy, but it’s NOT the stigma people think.  There is however a balance.  I love the phrase Living Beyond much better!”

This was my reply;

“I love the term too as it does not subtly negate the less pleasant sides of dementia and I agree living well is to hard for too many to accept, and reasonably so too. I’ve also thought a lot about the difference having money can make to what’s possible and know far more people with dementia are living with very limited funds, which adds to the negative impact of the diagnosis.”

This conversation brings me to talk about the impact of dementia and what many people tell me they experience after a diagnosis, which is that they end up almost being on the poverty line after the diagnosis, and this impacts on their ability to live well, or even beyond the diagnosis.

Perhaps though, with a change in the system and our post diagnostic support, and moving away from Prescribed Disengagement™, it may not may not impact the ability to live well or beyond the diagnosis as much as it does currently.

I am not by any stretch of the imagination a capitalist, and in fact, my husband says if he won the lottery (he buys the occasional ticket, I don’t as I dislike gambling), he probably would not tell me if he’d won, as I’d be likely to give half of it away to a homeless organisation, The Big Issue SA, and the other half to Dementia Alliance International!

But having money allows one to have freedom, and more importantly in the case of a terminal, progressive, chronic illness like dementia, to bring in services and support, and to be able to engage in a lifestyle and activities including travel and leisure, that definitely increase ones perceived well being and quality of life. In reality, most countries health care systems barely provide proper health care, let alone anything else!

So my two questions on the topic are this;

  1. Is living beyond dementia, or in fact, beyond any other terminal of chronic condition or disease, as simple as having available spare cash?
  2. Is it possible to live well without money?

To be really honest, I am not sure if money is the only important thing in the scenario, as I most definitely do believe our attitude has a lot to do with it, but without money, ultimately, I suspect it is really tough to live well or easily beyond any health issue or crisis, no matter what one’s definition of living well is.

For example, I have two friends who actually choose to be homeless, who say they prefer to live in the parklands, and away from the ‘trappings of money’. They find life is far less complicated, and it is their choice.

I also know people who talk about their own lives as if their financial resources have nothing to do with their lifestyle, and yet, for example, to become an artist or a writer or an actor, without financial resources coming from somewhere or from someone else, it is so much easier when you are financially supported while you are ‘struggling to make any money’ from your art. Without this support, it would be almost impossible to live or to bring up a family.

Without my husband still working, life might be quite different for us. Although, we have also been very careful with our money, and saved for tough times having both grown up in low income families. That has helped as well.

Being poor is hard work at the best of times; I know as I have been very poor a few times in my life, but add in a terminal illness, and that most definitely may mean any sense of living well, or beyond the disease if almost impossible…

Author: Kate Swaffer © 2015


13 thoughts on “Is living beyond dementia easier with money?

  1. As a person that was diagnosed a few years ago, I can tell you that having money or someone that helps support you is very important. I am very close to losing my home. I refuse to go in a shelter. I do animal rescue work and will not have my animals enter the shelter or animal control system. Social Services and other charity organizations have all said they would help, IF I gave up my animals. That is not an option. So, yes, having money/income is a need, not a want. I will be happier, as will my pets, with me living in my Jeep.

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    1. It is more than distressing to hear (yet again) that our world does not support people with dementia to live well… so much for humanity! I’d prefer to live in a Jeep, than place my cat in a shelter too, but it is shameful you are faced with that as the only option… take care.

      Perhaps joining us at http://www.joindai.org might give you some support, although you may not have access to the internet, which is needed as we have to operate online due to lack of funds too.

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      1. Having money would allow you to have someone come to your home to help care for your animals and keep the place up, and give you some help also.

        I’m sorry you are having to make so many hard decisions right now. Then you could also have help to stay in your home with the assistance you need for this time in your life.

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  2. Hi Kate
    You inspiration is amazing. I am a professional carer and I indeed love to include your values I adore and admire…..
    Money??? Well, it’s interesting …..
    If one was diagnosed with cancer v’s dementia or heart failure? For instance
    My husband has had ongoing heart issues for 12 months now my friends husband was diagnosed with cancer at the same time. Our out of pocket expenses have been endless. Me being a nurse as you know is no great income. We do it for passion not money and him unable to work has had a huge influence on our finances. Meanwhile our friends have had donation from community, tuition paid for kids, all medical costs covered. Community website funding the list goes on. I love our friends and would never want to trade places but it opens questions that our society chose to ignore.
    I see the daily battle of families lives being turned upside down through a poor and inadiquate health system that treat all illness equally. Improper diagnosis poorer outcomes to me is just not fair.
    Again wether it be depression or dementia thay all play equally upon “prescribed diagnosis” in some way or another.
    But having funding of some sort enables a proper diagnosis and I turn treatment to follow up with equaling quality of life.
    It’s truly disgusting that certain illnesses have an a sort of priority over others
    My goal is to work towards a more accepting society and to assist those in the process of correct and comprehensive diagnosis of dementia and mostly to ” living well beyond ALL”
    Thank you for sharing your story. It’s touched my heart.
    Best wishes and enjoy life.

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    1. Thank you for your kind words, and for sharing yourself here Lucinda, and especially for joining this conversation. The money issue is so relevant to anyone who is not 100% well or ‘perfect’!

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  3. My mum always said to us growing up “you can have a clean house even if you’re poor”.

    Ive known both; having money is easier and provides influence and ease. You can make change without it sure, but stress kicks in. Like going to the doctors and ending up with an unexpected $400 bill. Or not having health insurance because the monthly payments were better spent on icecreams at the beach to create a smile.

    I just wish people with the money would “activate” a little quicker to recognise the importance in fixing awareness for ageing and the associated life restrictions such as dementia, parkinsons etc.

    😉

    Liked by 1 person

  4. One thing you have done Kate is live by example, it has not been easy and it won’t be easy moving forward, now going through this with my father-in-law he thanks for for being his biggest advocate and I find myself saying “my friend Kate – who has YOD SAYS”) and no one questions me. They wanted him to stop everything, bowls, mowing lawns and sit in a chair and wait for it to catch him. He called me today to say he had just finish mowing the lawns and I asked if he had lost a limb, eye or anything.. He says it was fine – other than doing it on a really hot day I say go and do what you can whilst you can and within your means xxxx He resents losing his license but I am sure he will get use to it, I tell him I get it but can’t help, it’s the stroke and anti-convulsants that created it the vascular dementia is a secondary obstacle – found only because of MRI from brain bleed.

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    1. I think that a person’s ability to live beyond the diagnosis of any chronic and complicated medical situation is affected by one’s attitude and their financial resources. When the person has both a positive and motivated attitude, as well as the financial and insurance means to get good medical and in home supportive services, they’re likely to have a good life beyond the point of their illness/accident.

      My mother in law had dementia and starting around 2002 we needed to keep an eye on her as she lived in her own home. We were able to allow her to live in her own home until 2005 when she had a leg amputation. Her oldest daughter had been staying with her after work every night (she didn’t want her “living with her” so Jean lived out of her suitcase for several years), but after the amputation my stopping by or calling during the day wasn’t going to be enough to make sure she was safe. We had already looked into in home community resources (none were available for free or paid for by Medicaid in North Carolina) or adult day care (which Medicaid might possibly pay for, but there was a two year waiting list). We ended up having to place her in a skilled nursing facility, which still required us to spend most of our day and evenings with her to be sure she was being cared for properly.

      While that may have been seen as a negative for most, I know in many ways it ended up being the answer our family needed. She was taken care of fairly well because we were there almost every day from around 10am to 10pm and assisted in her care. We were involved in helping with other residents, helping with activities at the facility and making sure they knew our opinions about the care she and others were receiving. Most importantly she was challenged to be more social because she was around other people all day, not by herself as she’d been for so many years, or just talking to us. I also found it an amazingly helpful place to me as a caregiver because of the loving and kind nature of the other family members, nurses and other residents who were supportive and would reach out to comfort me when I sometimes needed help.

      My mom who lives in California, had an accident in 2002, in which she broke her neck and is a quadriplegic with no functional movement from the neck down. My parents had a good medical insurance plan through their retirement at work, long term care insurance with limits of $500,000/5 years, their retirement plans at work, my dad’s 401k plan with about $400,000 and Social Security, which at the time was a good retirement package for them until mom’s accident. They were able to use the long term care insurance with their medical plan for the first few years to help get things set up, and to start with in home care for mom. The stock market crash of 2008 cut their 401k investments in half, and around the same time their paid medical insurance premium at work was suspended by the company that bought out the one they had worked for. Now 13 years later they have used almost all the 401k money (something that wasn’t necessary but they did), they have used all mom’s long term care insurance, the community resources for in home care are more limited than they were in earlier years because of state budget cuts, my dad is now 84 years old trying to care for mom more hours than he had to at the beginning of this situation, they are only able to pay for 5 hours of in home help a day.

      Mom and Dad faced their new situation with a sad and negative point of view which has not changed. It’s limited their choices, limited their lives, and limited our ability to help them. It took me many years to understand that and let go of trying to change their point of view. Now with limited funds all they see is doom. They never chose to live beyond mom’s paralysis. They chose to ignore it. Now they’ve run out of money and are still unhappy with the outcome of her accident. If they had endless money things may have been a tad better, since Mom’s biggest issue is feeling that she caused them to become “destitute”. She feels guilty and angry about the financial situation her accident put them in, and Dad feels guilty he wasn’t there to keep her from falling, so neither one of them have looked beyond the incident to what life could be by acceptance. Unlimited money resources would take a big burden off of us kids who worry about Dad’s health as he tries to take care of Mom without the help of caretakers, and worry about their mental health without others coming into their home to add to their social stimulation. If there was more money they would have been able to move to an assisted living facility with nursing help, which would have been the ideal choice for them and us, and one I think they would have made. I also think they would have moved from where they are now to live closer to one of our families, as now my youngest sister is three hours away, and another is in Kansas, and I’m 3,000 miles off.

      I have a young friend of 31 who is a quadriplegic who can’t speak due to a brain stem stroke who lives in a skilled nursing facility near my parents. He’s lived there 12 years. He has no money and all his expenses are paid for by the state of California. He is a bright young man who is going to college to become a graphic artist so he can get a job working on computers building websites. His goal is to make enough money to be able to live in an independent living facility with an aide, pay for his own medical insurance and support himself. He is intelligent, positive, hard working and patient. He and I worked 18 months doing the paperwork to get him an electric powered wheelchair so he could move himself around the facility without having to wait for a nurse to come by and push him (manual wheelchairs are standard issue in nursing facilities under Medicaid/MediCal payment). We then began working to get him a new speech generating device, and it’s been almost three years with no real success, but he hasn’t given up. He’s kind, encouraging and patient, and sees beyond his present situation to a future that is outside and better. He has many supporters and friends because of his attitude and his personality.

      Take what you want from this. Money is the difference in the kind of in home care you get, and the level of nursing home care you receive, there’s no question about that. But mental attitude has so much to do with the ability to “live beyond”. I have seriously prayed that I will learn the lesson from my mom, my mother in law, from the many people I’ve been around to be able to live with grace, patience and tenacity, to live beyond. Thank you for that vision.

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