Three NOTs and a WILL

Iris L.

I fell into a deep depression in 2009 when the head geriatrician at an ARDC said to me, "You have to accept that you have dementia!"  I came through my deep depression by making these resolutions that guide me still today.

**If I have dementia, I'm not going out like a victim.

**I'm not going to sit on the sofa and wait to die.

**I'm not going to become a burden to my family.

**I will do whatever it takes to maintain my independence.

Maintaining my independence doesn't mean doing whatever the heck I want to do.  It means living so as to avoid the necessity for outsiders to rescue me from my mishaps and messes.  Maintaining independence involves skills and processes that need to be learned and implemented.  Most of these skills and processes I learned from the members here.

I made these resolutions into affirmations that I repeat every Sunday when I renew my spirit; sometimes I repeat on a daily basis, or whenever I need to focus. 

My situation is that I live alone in my paid-for home, without children or close family.  I do have a brother 3,000 miles away.  He is still working and has his own life.  Dementia means loss of abilities, loss of functioning.  I am posting about my journey because there may be a lurker in the same situation.  I hope what has helped me can help someone else with dementia or cognitive impairment who is living ALONE WITHOUT FAMILY TO HELP.

Iris

Iris L.

What did I mean by not being a victim?  That might sound strange.  I meant that I would be pro-active instead of re-active.  I would learn what I needed to learn to deal with this challenge that confronted me.  I knew it was bad but I also knew that there are some things that could be done to make my life not so bad.  I was going to find them and do them.

The first thing I did was to take Best Practices more seriously.  I focused on symptoms that I had that were obstacles to my functioning better.  These were mostly medical issues that had gone undiagnosed or untreated. I began to peruse the caregiver boards to see what they were doing for their LOs.  I realized I would have to figure out how to do those tasks for myself.  These included the legal, financial and household tasks.  All the time I knew that none of this was curative but was a way of making my life easier.  My focus became to make my life easier.

Iris 

Iris L.

PWDs who live alone might think about moving in with their family or having a family member move in with them when they need help.  I don't want to become a burden to my family, at the same time I don't want my family to burden me.  There is a learning curve to caregiving and most caregivers do not know what they are doing.  There is too much for a distant family member to learn.  Paid caregivers are not much better.  I have learned from the members here that only a few have real, competent training in caregiving.  I have also been disappointed by professional geriatric care managers.  

This is why I decided that it would be best for me to learn what care I would need, and provide it for myself.  I can't rely on an outsider to do this for me.  The first thing to do was to develop a care plan.  My first care plan was very simple--to get myself and my cats fed every day and to get my bills paid.  

The APS social worker had suggested that I enroll in Meals on Wheels, but I didn't want to do that.  She then suggested getting frozen entrees from the supermarket.  This I could do.  I made sure I had a supply of dinners along with other food for breakfasts and lunches.  I put several of my recurring bills on automatic payment.  These two steps were a huge relief to me.  These simple steps kept me living independently for months.

Iris

 

Michael Ellenbogen

I get everting you say Iris but you do need to prepare for when things get worse as there is a time we can no longer do even the simplest things which I am finding out and its very scary if you have no one around you to look out for you.

Iris L.

I'm glad you are reading my thread, Michael.  I am posting it for myself and to help lurkers who are trying to figure out how to deal with living with cognitive impairment and dementia while living alone without a caregiver.  There are some of us who do not have a capable spouse like you have or a capable child to help.  

You are absolutely right, we need to prepare for progression.  Even though my neurologist determined that I don't have AD, I can still tell thatI am progressing.   Mimi S proposed following Best Practices on order to prolong the early stages.  We were to use the early stages to make preparations.  Best Practices helped me so much that I could take advantage of my prolonged early stages to do my bucket list, which was to travel to several overseas places, also to go on the Alzheimer's Cruise where I met you and your wife and lovely people living with dementia and their care partners.  

I don't have a family caregiver and my two very close friends who were like sisters to me, abandoned me.  Abandonment is a very real occurrence for people living with dementia.  The abandonment that I experienced in my personal life was confirmed by many stories on these pages.  This made me realize that I had to figure out an alternative plan.  And I do mean figure out, because the care plan for a solo PWD is not obvious.  The main place I have found guidance is from reading these pages from other members.  I want to give back some of what I gave learned to help myself so that others who are solo won't have such a hard time.  Their time will be hard but perhaps a little bit easier.

Having dementia is the hardest disease, harder than cancer.  If you have cancer, even bad cancer, everyone helps.  But there is little help for dementia.  Very little.  I've learned a lot of IMPORTAMT concepts of care that are not found in the outside world.  I am trying to regurgitate them into one place.

 

Iris

Michael Ellenbogen

I would be more then happy to work with you to help get you plan and get someone to help watch over you as you need it.

ladyzetta

Thank You Iris,    

I find this thread very interesting. My DH passed away 3 years ago he had dementia, I learned a lot from this website and from posters like yourself. 

 Not only did I learn a lot I got also got  a lot of emotional support from these same posters. I am now ready to prepare for myself just incase the time comes I need to be.

 I am the oldest one in the family now and I do not want to place my care on any of my children. 

Thanks to you and Michael for all your input.  Hugs Zetta 

Iris L.

Thank you for your offer, Michael.  I know that I do need help.  My problem is that the "help" is not helpful.  They are "educated" and may have advanced degrees, but they do not promote the caregiving concepts that are promoted by the members here.  I'm talking about concepts like living near your resources, simplifying the home, making safety a priority, planning for the worse days not the better days, or making legal and financial preparations. 

At first, I tried to find a competent geriatric care manager to fulfill the role of a family caregiver.  I have not found one who knew what I needed.  But I have interviewed only three, I will probably need to interview more in the future.  Now, it's like I'm using the message board members as my personal virtual care manager.  

I know I need to get on the ball, because despite not having Alzheimer's Disease, I do know that what I have is progressing!  

Being house-bound by Covid allowed my progression to fly under the radar somewhat because I have not been going out and doing a lot of things like before.  But things are very bad for me and I know they will be getting worse. 

What type of help were you thinking of, Michael?  I have a care plan in my head, I need to write it out.  My overall plan is to remain in my own home as long as my cats are alive.  I would have loved to move to a senior facility, but after Covid, I'll take my chances in my own home for as long as I can.  

Zetta, if you can think of something to add for me, feel free.  You might think about moving closer to one of your kids.  That's what Mimi S did.

Iris

Michael Ellenbogen

It would be hard for me to answer your question without knowing all of your issues. But ether way it would need to be implemented base on different stages of need. You just need to have one or two persons able to help you execute it when the time comes that you need to rely on the help.

 

And I totally get it about getting good people. That is my biggest frustration these day. I once did everything around the house , cars and boats. For the first time in my life I have had to pay others to do it. I thought it would be so great to just pay folks and I would kick back without aggravation. Boy was I ever wrong. Everyone out there screws up everything and then you end up with more aggravation and even worse you may end up doing part of it yourself. So I get it on what you say. Like I said that is probably the worst part of having dementia. Dealing with all of the idiots when you know exactly what and how it needs to be done but just are no longer capable of doing the same as you once could due to our stollen minds. 

Iris L.

You've got it, Michael!  I hired a geriatric care manager.  She accompanied me to two medical appointments and I was satisfied, even comfortable with her.  But she had no idea how to help me with my mail.  She wanted me to sort my mail, when my problem was that I was cognitively unable to sort the mail and important mail was getting misplaced and lost.  

Professionals just don't understand people like us.  We are not totally far gone with dementia but we cannot function the way we used to function.  We may look okay and feel okay, but we cannot function.  For a long time it was hard for me because 1) I did not know what my exact cognitive impairments were, and 2) I did not know how to compensate.

I could not understand medical explanations for my difficulties.  I finally learned what was wrong with me from reading what caregiver members wrote about their LOs.  I learned about impaired executive functions, which is basically difficulty with multi-step processes.  I learned about sundowning.   Even though I don't have AD, I do have similar difficulties. 

I figured out on my own, how to take care of my mail and not let my bills get misplaced and overlooked.  If a professional GCM is not able to help me with this straight-forward task, she is useless to me.  The same for other tasks.  It's better for me to figure out how to compensate for what I can no longer do on my own, rather than have a "professional" come along and mess things up worse for me.

Writing things out on this thread is helping me coagulate my thoughts.  I know that's probably not the correct word, but it may work.  As I said before, I have plans in my head, but I need to write them down and be more definitive.  My mail has been piling up again these past few months.  It's probably because I had a very bad dizzy spell in June and had to seek medical treatment with a new specialist.  Anything out of the ordinary gets me distracted from my daily tasks.

Now that Labor Day will be over, I can refocus on my tasks and routines.  I actually feel good because I am able to accomplish tasks when I am able to focus.  The problem is that it's hard for me to focus.

The thing is that many answers are right here on these message board threads, but the answers are not easy to find.  I have learned so much, more than most professionals know.  But I have trouble retaining and a lot of it is scattered.

Iris

Michael Ellenbogen

That is the key we learn to compensate but there comes a time when that no longer works. I had to hook up my stereo cables of 8 cables and I could not do it right and had to have my wife do it as I screwed it up. I could do that with my eyes closed in the past and so much more complicated issues but compensation only works for a while. For example, I use to have all gas products for all of my lawn equipment and was real struggling with the noise, how use of the engines any more. I even use to know how to fix the engines but had trouble just figuring out how to start it or even mix the oil with gas. When I moved I purchased all battery powered items and they have given me new life as I can noy do it so easy again. But there will come a time that I may be of danger to myself by using them. We will only know over time.

 

You are defiantly on the right track but you need to find away to get some one do the bills for you. Maybe most of it with automation and other by allowing someone to do it for you but must seek your approval to make the payment. I would also insure I had it done legally to insure you are protected so they can not take advantage of you. I would think there is a way to do that but we need to speak to the right persons to see how that can be accomplished. I would start by speaking to those who handle elder abuse as they must know all the tricks on what you can do to plan for it now. 

Iris L.

You're right about the bills, Michael.  This is my plan for the month of September, to get more of my bills automated.  As a matter of fact, in today's newspaper was an article about a group that helps seniors that I did have some good rapport with.  I had forgotten about them.  I should give them a call again.  When I consulted them before, they sent me a social work intern.  She was very nice but she had no ideas of her own to advise me.  

A psychologist told me I had to be the one to ask for what I needed.  That's hard to do when you don't know what you need.  Thankfully, thanks to the members here, I am learning what my needs are and what they will be for the future.  

One of my mental obstacles was thinking that making tasks easier was giving up.  Americans like to be sophisticated with complicated things and constant new things.  Easy and battery-powered is fine with me now.  It's not giving up.

I kept my flip phone for a long time because I didn't think I could handle a smart phone.  But I did learn.  I am learning.  Not everything, but enough to be comfortable with it.  Pre-Covid, the senior center gave classes on using your smart phone.  There are competent helps and resources out there for people like me,  but they are not readily found.  This is my challenge.  

The main thing is that I had to realize and accept that I have to be PRO-ACTIVE, and not be passive and not accept mediocrity and ignorance from people who present themselves as experts in senior care.

Best Practices got me through the early stages, now I am in a middle stage and I have to step up my pro-activity.

Iris

Pathfinder52

Iris --

I frequently find myself applauding your posts (no matter which board you post to). In this thread, I hear and applaud your reasoning but I also imagine you needing some "helpers" that you may not be considering yet.  

I don't have dementia (yet) but have cared for DH for nearly a decade and watched his decline.  I notice the many things I manage for him and have to ask myself, as an aging woman (likely to be widowed) and certainly without any immediate family to support me, who will manage all that for ME??  I'm making some changes NOW.  

Here's what I'm working on. . .

• My housecleaner (she comes every two weeks) knows how to enter my house if I don't answer the door and she lives in my suburb.  So, I've arranged for her to text me every day (doesn't matter when) and if, for some reason I don't respond within 24 hours, she's welcome to call our local police for a "welfare check" or come over to the house herself.  If I were to be incapacitated (or die) my DH would certainly not know to call for help (or how to do that!).
• I have a health-proxy for my Advanced Directive  (a good friend who happens to be a Geriatric Clinical Nurse Specialist) but I also have given my DPOA to another dear friend who has access to all my financial accounts and knows my wishes if I am unable to manage my finances.  Like you, I have most everything (bills) automated.
• I'm building what I call "a Red Notebook" -- which is exactly that, a 3-ring binder with everything anyone would need to access my important papers, accounts, contacts, etc.  I try to update it quarterly and I keep it in a fire-proof safe (the DPOA friend and the Health Proxy friend have keys).

I hope this helps you (and any lurkers who need ideas for self-safety).  

I admire your grit and hope to develop a good layer of my own pro-active self-protection.

Warm regards,

--p

Michael Ellenbogen

I realy like some of your ideas.

Iris L.

It's nice to hear from you, Pathfinder.  I too, paid close attention to your posts.  You made some excellent suggestions!  You are very fortunate to have friends who are willing to step in when needed.  A long time ago,  I came up with the term "look-for friends."  These are people who would look for me if I were not around or couldn't be reached.  I have already had that happen.  A close friend who was also a close neighbor, once asked me if I had gone out of town because she had not seen me for a while.  I told her that I had not gone out of town, but that I had been sick.  She had not thought to telephone me or knock on my door after she noticed that I was missing.  So I realized I could not count on her to come look for me.  

I had two other close friends who abandoned me when I beginning my search to find out what was wrong with me.  At that time I had not asked for any help but was simply relating my what was going on with me.  These two women were like sisters to me.  One told me that all people our age had senior moments, and that I was talking too much about myself.  That one never stops talking about herself.  Just recently she called for support with her own serious medical problem, and I did support her.  The other one told me directly that she was going to back away from me.  I was devastated at the time, but these happenings made me realize that I could not rely on them.  It's good I learned this before I really needed them.  

I have continued to pay for daily newspaper delivery.  This is so that some random passerby might notice if my newspapers pile up and possibly try to call the police to investigate.  I do have one neighbor that I speak with daily on the telephone.  She is elderly, age 89, and sickly.  But she has two look-for friends of her own and she also has me.  She is not able to do much for herself, but she could be able to call the police for a welfare check.  

 

I realized a long time ago that I will have to rely on public resources and technology.  I was working with a very good social worker until a few days before one Christmas, when she gave me an article to read that said that believing in God is like having a psychosis.  I am a born-again Christian and I was greatly offended.  I am wary of having to be subjected to and dependent upon people with such anti-Christian bias.

I used to attend a few senior centers in my area.  They were to be my sources of resources since they are public places.  There used to be several resources for people like me.  But Covid shut them all down for in-person consultation and contact.  I have to figure out what is available now.  I know it won't be the same as before Covid.  

I am in the process of creating my own notebook.  I call it my Super Senior notebook.  I am a senior but I am a "super" senior because I am taking steps and making plans while living with significant medical issues and without family or close friend support.  I relish any more suggestions that you or other caregivers may have for me to incorporate into my plans.  Thank you so much!

Iris

Mint

Iris enjoyed this thread.  Wish we lived closer maybe I could help you some.  Know how you feel.  My mom and I talk twice a day.  When something happens to her, no one else checks in daily.  Think my mom would eventually call one of my sisters if we didn’t get a hold of one another, not sure.

I trust God and ask him to take care of me as he always has.  

Michael Ellenbogen

You would be happy to know that your idea is going to become a realty in many places I am working with.

dolor

Iris, yes, there is a lurker living alone without family to help. If there is one, there are more. 

Yes, your posts are tremendously helpful.

Iris L.

My brother, who lives on the other side of the country, visited with me for a few days last week.  I discussed our both getting older and not being married or having children.  I told him I was going to make him my POA.  Although he said "okay", he did not seem interested.  So I told him I would get a professional POA and make him secondary.  I don't like this idea but I feel like I have no choice.  My main concern is not being a burden.

Now that October is here, I've got to get going.  The end of the year will be here shortly.

Iris

Michael Ellenbogen

I am really sorry to hear that. I just dont understand people some time but I am not surprised.

Mint

Iris I’m sorry that your brother was not receptive to helping you.  Know that is hard.  

My sister is my POA, but I am starting to question that as she has made very poor decisions, IMO, regarding pandemic.  Her and I do not see alike.  Trying to just take my time and not do anything rash.