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If you live alone
llee08032
Posted: Tuesday, October 10, 2017 6:55 AM
Joined: 5/20/2014
Posts: 4408


If You Live Alone

Many people with Alzheimer's continue to live successfully on their own during the early stage of the disease. Making simple adjustments, taking safety precautions and having the support of others can make things easier.


If you live alone, it's crucial to make legal and financial plans now while you can participate in making decisions to ensure that others know your wishes, and know what to do.
> Learn more about planning ahead

Safetyback to top

There are several safety issues to consider that may help you maintain your independence for as long as possible.

Maximize Your Independence

Develop strategies to help you live day by day.

 

Self-care 
Changes in thinking may reduce your ability to make appropriate decisions about self-care and your day-to-day needs as the disease progresses. You may be at increased risk for harm, falls, wandering and/or malnutrition. You also may have difficulty managing personal hygiene or household tasks, which can lead to unsafe living conditions. Plan ahead for how you will address your basic needs, including housing, meals and physical care. Consider Meals on Wheels, homemaker services, or services to help with managing medications or bill paying.

If friends or family have expressed concern about your ability to perform certain roles or tasks, listen to their observations. Alzheimer's will eventually limit your own insights as to what you can safely do.

Tips:

 

  • Arrange for someone to help you with housekeeping, meals, transportation and daily chores. Find services by contacting your local chapter or use our online tool, Community Resource Finder.
  • Make arrangements for direct deposit of checks, such as your retirement pension or Social Security benefits.
  • Make arrangements for help in paying bills. You can give a trusted individual the legal authority to handle money matters or speak with your bank or service provider about automatic bill pay.
  • Establish a system for medication reminders.

 

Falls 
You may experience changes in your balance that lead to an increased risk of falling. Changes in your sensitivity to light, the contrast between colors, or depth perception may affect your balance and comfort with navigating. 
> Take the safety survey to receive a customized home safety checklist

Driving
At some point, everyone with a diagnosis of Alzheimer's will no longer be able to drive. Planning ahead before driving becomes an issue can help you answer the question “How will I get from place to place when I can no longer drive?” Putting a plan in place can be empowering and provides the opportunity to make choices that can help maintain your independence for as long as possible.
Dementia and Driving Resource Center

TIPS FROM PEOPLE WITH ALZHEIMER'S

Preparing to stop driving

 

  1. I sit in the front seat as a way to get used to being a passenger rather than the driver.

     

  2. My care partner and I have discussed the circumstances and made a plan for when I will stop driving.

     

  3. I take other forms of transportation or have care partner/friends drive me.

 

> See more tips

Wandering 
Everyone with a diagnosis of Alzheimer's is at risk for wandering. Increased confusion and agitation can cause people with the disease to wander and get lost. Wandering can be very dangerous, and if you live alone, there is no one to monitor for changes that may increase your risk. 
> MedicAlert® + Alzheimer's Association Safe Return® is a safety system to consider.

Isolation and loneliness
It is common to feel isolated or withdrawn from others after receiving your diagnosis or as the disease progresses. Establish a routine with friends and family that encourages you to stay connected with them. Also take advantage of programs and services that involve you with others living in the early stage of Alzheimer's.

Tips:

  • Have family, friends or a community service program call or visit you daily.
  • Keep a list of questions and concerns to discuss with them. Include items for them to check out around the house, such as electrical appliances, mail and food.

 

Asking for help

alzheimers supportIt can be difficult to know when to ask for help or to admit that help is needed. You may feel that by asking others for help, you will become too dependent on others. Have a conversation with family and friends about the daily tasks that have become more difficult for you to complete. Be specific about what they can do to help you. 
> Learn how to build a care team

Health care services 
Individuals who live alone are more reliant on their own perceptions of when they need care. As a result, they are less likely to use health care services and are at a greater risk for nursing home placement than those who live with a care partner. There are services that can help you assess your health and care needs, and programs that can help you meet those needs when necessary. Learn about what health care services are available in your community such visiting nurses, private duty caregivers, physical therapy or assistance with medical devices. All of these services can help you optimize your health while living safely at home. 
> Find health care services using our Community Resource Finder or contact your local chapter

In-home support services 
Common unmet needs for individuals living alone include help with chores and self-care, such as bathing and meals. Investigate the options for in-home support services, including paid or volunteer caregivers, companionship care, housekeeping services or Meals on Wheels.

Tips: 

  • Plan for home-delivered meals if they are available in your community such as Meals on Wheels.
  • Arrange to have your local grocery store deliver your groceries.
  • Leave a set of house keys with a neighbor you trust.
  • Make arrangements for someone to regularly check your smoke alarm and carbon monoxide detector.

jfkoc
Posted: Tuesday, October 10, 2017 9:05 AM
Joined: 12/4/2011
Posts: 21246


Thanks...is there a link to this info?
alz+
Posted: Tuesday, October 10, 2017 9:38 AM
Joined: 9/12/2013
Posts: 3608


reading through this information I kept thinking I could not have done most of this by the time I was diagnosed.

one never knows if their caregiver will become disabled or die, and then there is the learning curve for partners as well as for ourselves.

I might have been able to use a MENU of options, a simple diagram of possible choices. There are not many options!

My husband is not feeling well and just the idea that I am supposed to be in charge of dog needs and my needs on my own had me anxious.

Then I reheated some soup that I suspected was past use by date, and ate it while thinking this isn't a good idea.

If it were possible to live alone I would have preferred that, nothing is more lonely than living with someone who does not want to be around you! also living with a care partner means having to deal with all their ups and downs and emotional states etc.

this is one of those times when I think a robot helper would be ideal, they never take offense and can be turned off. ha!

great information, has me rethinking.

Hope you are doing a little better!


grandmalynda
Posted: Tuesday, October 10, 2017 9:46 AM
Joined: 12/3/2016
Posts: 374


I love the idea of a robot helper alz+!  How nice to turn it off whenever you want!!!

--Lynda


Canada111
Posted: Friday, October 13, 2017 1:40 AM
Joined: 8/22/2016
Posts: 263


I've been away from this forum for awhile and feel moved to respond to this.

I do not live alone and my husband does the food, pays most of the bills. He works full time and takes care of the house and repairs. I used to do everything. As of August, I no longer have a job or career, as I resigned. Now my financial independence is gone. My career is gone. He takes care of me. I can no longer do the things I did. Doing the dishes and making myself scrambled eggs (something I can still prepare) is a small triumph. Getting dressed is an orchestration in planning. I have gotten physically weaker and I become confused and agitated. 

I raised our 2 adult children, and did all that my caregiver husband does now, but for four people. My kids are almost 9 years apart so my mothering was ongoing for a long time. I juggled several careers and family care with gusto. I was an earner and matriarch of my family for 4 decades. 

For my husband the food shopping and preparation is a very big deal. How will this man handle progression of my disease if food prep is debilitating? I am not incontinent and shower and dress myself. It's obvious that taking care of a dementia patient is a thankless task. Unlike the children growing up with all of us rejoicing in their accomplishments, taking care of me does not offer these rich rewards.

The reality is that if you have an extremely reluctant caregiver who is your marital partner, it is an even harder road. 

Living alone and having to plan for the future is more than daunting with this disease. However, being cared for by a mate who is full of resentment, is exhausted and not taking care of himself/herself very well, and has no real outside support is not much better. It causes stress for the person with the disease and that in turn causes more stress for the caregiver. 

It seems to me this is more often the case with women who are diagnosed. I am aware that there are some very loving husbands out there who are rising to this task. I read the caregiver forum and see that they exist. Yet it not the norm. By and large, I read that the men are the quickest to place their wives in AL or nursing homes if they can afford to. 

We were the matriarchs, the moms, the teachers, the givers. as well as feminist breadwinners. It was normal to give and receive love when we were brilliant and strong and achieving. Now that we're sick with cognitive impairment and physically weaker, we are no longer valued. Sure our kids love us- from a distance. But do our husbands love us? We are still women, after all, and we long for the kind of relationship that is imbued with understanding and tenderness. We still want to be touched. We still have the capacity to love. For those of you who have relationships where you still retain a modicum of respect, tenderness and authentic sharing, you are truly blessed. 

 


Mimi S.
Posted: Friday, October 13, 2017 8:47 AM
Joined: 11/29/2011
Posts: 7027


Welcome back, Canada,

You were missed.

I hear what you are saying and I am so sorry.

In an ideal word in which money was no object, I would look for a Continuing Care Community or Assisted Living with an on-site locked unit.  From what you write you need the meal plan.  You need a community with many planned activities daily that encompass physical, cognitive and social activities. The community I have chosen for myself has back and forth movement between units as appropriate. For example, you might need Assisted Living for meals and med giving but you would certainly be able to attend concerts, book clubs, etc. with the Independent Living folks. 

You are a social person and being in an enviornment where you get social contact is important. The place I have chosen offers Memories in the Making, an art program. However, it also has a studio for your use.  Have you been doing any art?

Have you checked out your local library to see what activities they offer that you would be interested in?

Do you go for a daily walk?  How about activities at your local Y? Might be a way of meeting new people.

 


alz+
Posted: Saturday, October 14, 2017 11:50 AM
Joined: 9/12/2013
Posts: 3608


so glad I checked in this morning. 

My husband does not feel well and is doing zip to make things better. His thinking is off but he says that it is either not true or takes offense and raises his voice. That triggers ptsd reactions and if I am not able to walk away in that moment we fight. It is horrible to live with someone who one knows is not the caregiver type or who resents us for other reasons.

There is SO MUCH letting go! Now I am very conflicted worrying that he will likely have a stroke or something and all that is left financially will go to HIS CARE. I feel so selfish for thinking this way which creates more distress for me and I yearn to live alone.

I actually told him I want a divorce to avoid being saddled with his future expenses. As my condition progresses so does the anxiety. 

Now pain is becoming a factor, my vision is deteriorating, I choke and I am weakening. Hospice nurse forgot our last appointment! When there is no one dependable - fear and anxiety increase, that makes me weaker.

I imagine myself living in a tiny house (like on HGTV) in one of my kids' back yards - that is my ideal. They do not seem to be able to move me closer, and by now "closer" is like 20 feet away!

Assisted living is too costly and again I would be moving to unfamiliar place and feel creeped out in those settings. so I spend hours listening to old Alan Watts lectures on living with uncertainty and it usually puts me to sleep.

My nightmare now is a disabled angry husband soaking off our reserves. In my imagination I have a tiny house, a dog, no responsibilities, and people to visit with who are friendly and dependable. Right now my alternate home possibility is in middle of northern california wildfires. I think I am stuck.



Mimi S.
Posted: Saturday, October 14, 2017 12:57 PM
Joined: 11/29/2011
Posts: 7027


Dear alz+.

I'm so glad you are able to vent here.
I can't imagine a Hospice nurse forgetting an appointment and not attempting to make it up.

 

Do you suppose both you and your husband are worried about the same thing?  How to cope with a dependent spouse?

 

Take care.
w/e
Posted: Saturday, October 14, 2017 3:17 PM
Joined: 3/7/2012
Posts: 1747


To Alz + and to all the others... kisses and hugs. I have not visited this particular discussion board in ages.

 I see a few newer names. For the newbies. I am a widow now. My immortal beloved died suddenly at home. Cardiac death. Three+ years ago. He struggled with symptoms of dementia/AD for 10+ years. He was 68 y/o when he died.

 Yes, it is difficult to live alone. Especially with symptoms of dementia. As Ilee's posting indicates, you can start to prepare and to make legal arrangements, now. You can make adjustments to your habitat as early as possible. Yes, it all sucks. You know what is coming... In the meantime, try to survive the hurricane of dementia. And maintain some quality of life.

It is your future. It is your life. Mold it. Sculpt it. Continue to be pro-active.

Alz+, with all due respect, excuse me for being blunt, but from what you have written, I believe your home environment is becoming toxic.

 Why do you continue to live with a person who continues to destroy you a piece at a time while he is saying "I love you, honey." A person who does not know your worth as a human being. A person who is harassing you psychologically? Why do you take his problems and make it yours? Is your care for him greater than the care you provide for yourself?

 In my humble opinion, your present living conditions are NOT healthy for your well-being...

 The prison door is open. Take your dignity. Contact your local social services. You have a voice. You are in need of help. Do not become a victim of neglect. The time to take action in order to create a better future, it is now. Do Not wait for when you have more adv. symptoms of dementia.

It is really none of my business, but really, really. Take control. Fight for your rights. Mold your future, with dementia and all, as best you can.

Courage. There is someone who lovingly says that caretakers are heroes. He gives medals to caretakers. I give medals to persons living with symptoms of dementia, as well... They both deserve it. They both are heroes.

I love you all dearly.

Once again,  kisses and hugs.


jfkoc
Posted: Saturday, October 14, 2017 3:42 PM
Joined: 12/4/2011
Posts: 21246


ALZ...please make an appointment with the Hospice social worker as well as the chaplain. Discuss with them your plan B. Also the plan B for Keeper.

Have you thought about Keeper applying for Hospice?


alz+
Posted: Sunday, October 15, 2017 5:20 AM
Joined: 9/12/2013
Posts: 3608


w/e - If you knew how many of us are living like this your head would spin.

I have not been so explicit about my living situation because I have nowhere else to go and because being called out - to stand up for myself when I can not see, hear, drive, or afford an alternative makes me want to go over a cliff.

are you taking me in? no.

as for "why" -  oh let's say there were good days and losing my capacity to plan or make things happen ended because I had dementia but was told I was mentally ill and drugged for years. and then my mother rescinded the money help my father promised when I could not longer work.

I have yet to imagine something else better, that is also possible to create, using my own initiative.  Most days I am laid out. all weird.


llee08032
Posted: Sunday, October 15, 2017 10:59 AM
Joined: 5/20/2014
Posts: 4408


No PWD wants to feel like they are a burden. Nor do they want to feel stuck living with a spouse, friend, partner or family member who resents them. We know that a hostile living environment = exacerbation of symptoms and stress for PWD. There are too few choices and alternative housing opportunities available and many have no other choice but to stay in their current situation. 

I like the idea of a tiny house. A village of tiny houses for PWD.  If only we had an organization working toward such a plan for us! 

We all are where we are at this given time for whatever reason. How do we make that work? How do you separate yourself (emotionally & physically) from hostile attitudes while living in the same household with someone who resents you? What do you do if something happens to your caregiver? How can you ensure your needs are going to be met if your caregiver is not helping you enough or is unable to help you to the extent that you need? Have you fully assessed what community supports are available to you? Is there a neighbor or friend that might be willing to help in some way? etc.


Jo C.
Posted: Sunday, October 15, 2017 12:14 PM
Joined: 12/9/2011
Posts: 13599


jfkoc, here is the link you requested:

http://www.alz.org/i-have-alz/if-you-live-alone.asp#legal

J.


Jo C.
Posted: Sunday, October 15, 2017 1:34 PM
Joined: 12/9/2011
Posts: 13599


alz+, it is unfortunate that Michigan's Medicaid does not cover Assisted Living or Board and Care.  However, have you checked out the Michigan Waiver Program for year 2017 for seniors needing in-home assistance?   Of course this does not take care of the spousal issues, but it is still good to know what is out there and it may take some stress off of Mr. Keeper which may put him in a better frame of mind. 

This Waiver program is purposefully designed to keep seniors out of nursing homes and instead puts a variety of assistance in one's house to achieve that ability to stay at home.   You can scroll down and read about the MI Waiver Program information to get a  good idea of what is available:

 https://www.payingforseniorcare.com/financial-assistance/michigan.html

This of course does not relieve the dependent or increasingly dependent person from not being able to make a move away from a problem spouse or to be able to make one's own desires come true for a specific living environment.  In llee's case there is no spouse in the house; she is juggling as fast as she can to keep all the balls in the air.  That is huge. 

The bottom line to absolute full freedom to make optimum desired choices to obtain more desireable living situations and being able to obtain best needs for daily care in the home or other home-style setting, is having money.   Lots and lots and lots of money.  Those who have it get what they want; those who do not have it do not have a lot of options.

The average cost of Assisted Living in Michigan is just shy of $4,000/month.  This of course is not the sweet tiny house being discussed here where one can get away and do what one wishes when one wishes, and have privacy, etc.

The lack of such unlimited assets  restricts many choices, and since so many people in this situation do not have family or friends that step up and, "rise to the occasion,"  it causes people who are becoming dependent to have to weigh one situation against another and choose or tolerate the lesser of two evils.

The middle class and the poor are lost in the dust on this.  No one in these classes has unlimited assets.

Becoming more and more dependent upon a spouse is fraught with all sorts of complexities, especially if the spouse is or becomes resentful and/or neglectful.

The entire situation of continuing to live with a resentful or neglectful unloving spouse does not have a simple solution for a person who has become or who is becoming dependent.   It is not simple at all.

 Some of it has to do with finances, some of it has to do with a relationship of many years and what that relationship has been like.  Not all marriages have been nurturing, but many of those spouses have learned to live with those dynamics and accommodate themselves and their relationship. 

When dementia hits and advances, it really affects the coping skills of both the person with dementia as well as the well spouse from what the coping skills were before.

It also often affects each partners personality and thought processes - in this I mean, depression, anger, irritability, feelings of hopelessness, diminished coping skills, etc.  This can happen with any illness, but with dementia it is so much harder for the person with dementia to tolerate the strife, upset, and feelings of guilt for being the one who is dependent. 

 Never will I be swift to judge one who continues to live with their resentful spouse;  I am not walking in their moccasins and there are SO many aspects to relationships they cannot be counted.   My experience will not be yours and vice versa.

 Sometimes the two in the relationship are angry, resentful, stressed and frustrated from and with the disease itself, but it comes out directed at one another's perceived shortcomings.   This is not unusual.

 alz+, if thinking of getting away to someplace else is something extremely important to you, even if you do not plan to actually leave at this point, why not make an appointment with the Hospice Social Worker and discuss your feelings and find out what you can do to make a, "Plan B," to change your living situation.  Just knowing that the possibility is there can relieve some of the stress.

My heartfelt warmest thoughts and soft hugs goes out to all, I am in awe of all you do an who you are.  It is my absolute honor to have met such marvelously wonderful people.

 J.

 P.S.  grandmalynda, a robot!   I recall there was a wonderful TV program back in the 80's with Maureen Stapleton playing the lead; I think it was called, "The Electric Grandmother."  In this, there was a humanoid robot who looked just like a grandmother.   She was a wonderful loving, nurturing presence, but when she was not needed at the moment, you could put her away until you needed her again.   Works for me!  The program was based on the book, "I Sing The Body Electric."


w/e
Posted: Sunday, October 15, 2017 1:46 PM
Joined: 3/7/2012
Posts: 1747


Alz+ and Ilee, thank you for the prompt replies. It helps me clarify some of my thinking.... And, as well, I wish I could express myself better in English!

Ilee's questions are perfect. Now we must search for the answers while taking into consideration the individual situations. Critical thinking to identify the contradictions.

Alz+, good challenge as to, "Are you taking me in? no."

 I am NOT a citizen of  the USA. I do NOT reside in the USA. Unless you have legal documents, you cannot reside in my country. I cannot reside in your country. But I do understand what you meant. Some people with good intentions are quick to offer suggestions, advice, thoughts, and prayers. But they are not as quick or as willing to offer assistance when it is most needed. I hear you loud and clear.

About courage... and freedom... In my youth, I lived through a civil war. My parents always said to me, "Freedom is not given to you. You take it. It is for you to transform society."

 I have learned that fear and/or feelings of helplessness they take away the focus from the battles we are fighting for. And the determination.

 Courage is about self-determination. Self-affirmation. Self-preservation. Courage to overcome that which has the potential to destroy the self. Courage is the power of LIFE to affirm itself. I affirm my life with every breath I take. When I was facing my beloved in the arms of Death, in the midst of my shock, he gave me the courage to continue affirming Life in the face of adversity and despair.

Yes. I know that PWD they do not want to feel like a burden. I often heard my immortal beloved said that to me. I would answer him. "Firstly, I received freedom of choice from Eve. I care for you because I choose to. And, secondly,  because it is a human quality to love, to accept, and to care for others."

I do wish your government would provide more medical care and better assistance to the most vulnerable members of your society and not only during moments of natural  disasters... Food. Clean water. Housing. Medical care. Education. Employment. They are basic fundamental universal human rights, in my opinion.

The planet earth. So small. And so fragile. My dream is a world of care, acceptance, respect. I dream of. I hope for. I work for. A world of acceptance and respect. Building a community. A village. Taking care of one another... My butt on grain of sand, drifting among the stars.

 It is possible. Better is always possible.

Courage.

Have a good one.


julielarson
Posted: Sunday, October 15, 2017 2:55 PM
Joined: 9/30/2015
Posts: 1155


w/e I agree that those things are a right but even here we must fight for everyone of those things you mention... It really is unfortunate.. This system I do not believe was set up to make those at the top richer but it is working out that way.... Those of us who have not been dealt the best hand must fight for everything we get at times.... Usually those times are when we are at our weakest it seems.. basic things should be guaranteed by our government.
w/e
Posted: Sunday, October 15, 2017 5:17 PM
Joined: 3/7/2012
Posts: 1747


Jo C. , we were writing at the same time.

My husband used to say that I have the tendency to drift from Plato to Nietzsche in a flash. He could never put me in a box when my thoughts were rushing and flying wide and high. He often called me a romantic idealist, but with some big sprinkles of realism as well, when it was needed.

I do not minimize the importance of what you have written so extensively and eloquently. As always, you have fulfilled brilliantly your contribution as an Alzconnected "guidance counselor" volunteer. Many here look-up to you, admire you, and listen well to all your words. If memory serves me right, I remember when our Agent 99 wrote that if you said jump from a bridge, she would. I think she said that.

The complexities are many.

Smoke signals greetings to you from my neck of the woods.

 Be well.


Sayra
Posted: Sunday, October 15, 2017 5:42 PM
Joined: 8/10/2016
Posts: 4056


Thank you for the link.  I am single, have no children.  My grandmother had dementia, seems my mom is headed down that path also. So this is a concern for me also.
alz+
Posted: Sunday, October 15, 2017 5:59 PM
Joined: 9/12/2013
Posts: 3608


thanks for letting me vent today.

note about hospice nurse: we got new cell phones, jitterbug smartphones, and she called but I did not hear it and do not know how to answer it and hate phones.

so she is calling in morning to make appointment if I still want it.

*****

My condition feels like it is going south on different levels. Husband left for 3 hours today and I knew I could not do this alone. My shoulders pull into my neck, my feet go into a cocked position until my shins burn. I have to manage swallowing and often choke even on water.

My strength feels sapped. It feels like doom, I swear and I think it is because the oil keeps me able to write here and some other places that I can tell others what this is like.

My back pain has increased, and the recurring pain under ribs.  I want to shed all responsibility ... very weird.

things calmer, will work out a plan No. 98


Jo C.
Posted: Monday, October 16, 2017 1:14 AM
Joined: 12/9/2011
Posts: 13599


alz+, venting is one of the most important dynamics on this Message Board and I am glad that you  did.  You are a very honest and open person and that is part of what makes you so wonderful to know.  However, I am so sorry that you are having such uncomfortable and debilitating symptoms.

 Something I wonder about.  The description of what you are physically experieneing is a bit concerning.  When you speak to the Hospice RN next, it would be good to request to have blood drawn and labs run.   You may have some issues that can easily be remedied and relieve the symptoms you have been having.

Suggestion:   It would be good for the RN to request an order for a CBC, Chem Panel, Thyroid Panel, B12, Vitamin D and Magnesium levels, med screen as appropriate, another UA "just in case," and anything else the Hospice MD feels is pertinent.  The RN can get an order for that.  

 I certainly know what you mean about your phone.   My son recently gave me a "smart phone;" geeze . . . . I want one with a lower IQ!   It often drives me a bit nuts and I find myself scolding it.  Not good; sometimes I think I almost want to revert to my old dumb phone.

 Scolding myself now:   I was a bit harsh regarding the missing links regarding care for adults.   It has been a concerning week regarding insurance coverages and healthcare and other serviccs, etc.  I had just listened to some issues regarding this on the news and was still gnashing my teeth about it.  I am going to have to watch less news broadcasts.

Being that in my professional career much of my time was spent with patients and families and plugging in services, etc. for them, I found out just how much this affects people in so many ways.   There are services and while they may not be what we would prefer, we can often cobble together sufficient assistance to help us move forward.

 What I do recommend is to try hard to work with a professional such as an experienced Social Worker who is in the field; contacting the local Area Agency on Aging, research or have a Loved One or friend help research the various possibilities for future reference.  You know the drill, "Plan B" knowlege far before one needs it.

Sometimes the first Plan may not be up to snuff and we have to adjust things.  We ran into the lack of funds with one of my LOs and Medicaid was necessary.  The first arrangement made was not a good fit.   So we changed lanes and made a move.  The second arrangement was awesomely wonderful.   Great staff, great Administration that was very responsive, wonderful loving care, good activities available, lots of outdoor space available, terrific food, and while not fancy-shmancey, it was comfortable, homey, and a well cared for environment.  I stumbled upon it by accident with information that came from a Hospice nurse (not providing services to our LO); what a blessing that was!

 One can find out if there are any religious orders who run local alternative living arrangements.  There are Lutheran, Dutch Reform Church, Friends Church, Catholic, Methodist, Jewish, etc. groups that have such facilities and they are nearly always not for profit.  There are also non-religious based groups that are not for profit; they plow more back into their residents care.  No afternoon wine tasting nor truly snooty lobbies and no dripping crystal chandeliers, but the care and caring is there.  Many of these are multiple need facilities with Independent Living to Assisted Living to Memory Care to Nursing Home care.

 Staying at home is becoming more of a focus of attention since the population is aging.  There are programs being put into place in the various states focused on keeping the person in their own home with increased hands on services rather than going into a care facility; it is cheaper for the states to do that.  This is not yet 24 hour care, but the move to home care is beginning to slowly grow.  Hopefully this will not be compromised by recent changes we hear about.

 Our Mimi has done awesome research far in advance of her future need.  She did this several years ago and continues to follow along and ensure all is still the same for her alternative living facility preference.   Mimi is an inspiration and when I grow up I hope to be a lot more like her in being proactive.   She is a good example of looking far ahead for the "Plan B," for when that becomes a necessity.

  w/e; omigosh, I do remember Agent 99 mentioning that bridge, she made me chuckle; I have not seen her lately.   I miss our friends when they waft away.

 By the way w/e, you have mentioned several times being outside the U.S.; may I be so bold to ask what country you are in?  We have people who come here from many different countries and it is always so good to meet them.   Our two Aussies are quite active and we have had folks from Thailand, Mexico, Japan, India, Great Britain, and more.  It is always delightful to share with so many and to learn about one another's dynamics with their LOs and themselves.

Well, it is late where I am; 11:00 pm, I am usually fast asleep by now, guess I'd better get off to bed before my fingers can no longer type. 

See you all soon,

 J.


llee08032
Posted: Monday, October 16, 2017 5:07 AM
Joined: 5/20/2014
Posts: 4408


(((((((Alz+))))))))

Hate hearing that your having pain! Maximize having the hospice nurse and the services that are available to you. Do look into getting the labs Jo suggested. Perhaps physical pain can be remedied somewhat. 

Dehydration and low potassium level can cause muscle contractions. Eat several bannana's a day and stay hydrated. You may need IV fluids if your choking on water and foods that contain water. 

I have the Jitterbug smart phone also. It's smarter than me and I didn't know how to answer a call either.  You'll see a picture of a red phone handle on the screen when it rings. All you do to answer is lightly swipe the phone handle with finger to the right of the screen. 


elainechem
Posted: Tuesday, October 17, 2017 5:50 PM
Joined: 7/30/2013
Posts: 6064


alz+,
Are there any inpatient hospice units in your area? I'm thinking that might work better for you than living at home. 

alz+
Posted: Friday, October 20, 2017 3:15 PM
Joined: 9/12/2013
Posts: 3608


Thanks for the smart responses.

L lee - I have not even tried to do the phone answer swipe thing. I have such visual problems and just don't want to answer a phone!

****

The hospice nurse was terrific. I now have some virus I got from husband, dry coughing for 2 weeks with body aches expected as best possible prediction.

She is speaking to my doctor and is going to come Monday (maybe not since I am in bed coughing and miserable) and we will look at some apartments soon. She understands that this was my home before I met husband, it is easy for me to have a dog here and walk freely. I have a swimming pool to use all winter down the road.

She thinks I can live alone with outside help and wants me to experiment with it. Husband is the issue. I don't expect him to do much for me and it is a huge relief when someone else is in the house who can handle a situation. 

I can not lower my expectations more than I have, all he has to do now is be civil and food shop and walk dog one of the times per day. He is going to meet with a social worker from Hospice soon and if they think I am "unsafe" - well they have not answered that.

It is easiest and least expensive for me to stay in my own house. I have no mortgage and ridiculously low taxes. My peace of mind and a place to live without tension is what I hope for.

Really sick with this chest thing -I have not been away from home for weeks. Our car was hit - always something. I won't get in it now.

thanks again for all the time and thought put into suggestions. I don't have enough time left to be ashamed of stuff but it is humbling, if not humiliating, to discuss marriage issues.

Oh, turns out he was giving me original dose of cbd oil for months. I took over all my meds and oil and cognition picked up. I only speak to him now to request or inform about a specific thing. He does not seem to care. 

Loneliness is something I am familiar with. Refuse to live with anyone who is bitter and tense.Not going to test my limits anymore.

thanks for opportunity to speak out in my distress. love you all


llee08032
Posted: Saturday, October 21, 2017 9:19 AM
Joined: 5/20/2014
Posts: 4408


((((((((Alz+))))))))),

Think of you everyday! Could mister go live in an apartment and you stay in the house with outside help? Just a thought. Perhaps get separate apartments and sell house so you have extra money. Have you thought about a reverse mortgage to help you stay in your house and pay expenses if living alone? People care about you and we are all on your side here and want what's best for you and want you to have what you want. It needs to be all about you and what you need and want. Sorry to hear you are sick with virus. Love LL


llee08032
Posted: Saturday, October 21, 2017 9:27 AM
Joined: 5/20/2014
Posts: 4408


Thinking of Iris and how she could add to and enrich this thread with her exp of living alone. Miss her and how she would be on the board everyday keeping things going. Missing you Alz+ not here on board much either. Trying to hang in but it's not the same. Prayers and love to everyone.
alz+
Posted: Sunday, October 22, 2017 3:35 AM
Joined: 9/12/2013
Posts: 3608


L lee - I miss Iris too.  she was first person to really help me - daily - when I was first diagnosed. I understand her wanting to expand her own life now and have some adventures.

I am still down with this dry hacking cough - 3 neighbors shared yesterday they also have it. The coughing is sporatic and generates intense muscle pain. Weird that a whole neighborhood would come down with same symptoms  - we have not been visiting each other.

My living situation is on the table. Keeper is avoiding me, and I avoid him. The woman I met a year ago while dog walking went back to her home in the south and emailed she may spend winter there. 

Since I increased my cbd oil I was able to make myself a veggie soup which lasted 3 days and was perfect for the sore throat cough.

rethinking this stage and my prospects.