January 23, 2014

A Balancing Act Between Family & Self

One of the topics identified in the recent post, What topics or concerns should I address, is not an easy subject, but one that affects many of us. The question, and the answers, can be emotional and stressful. It  can cause feelings of guilt or even abandonment. Depending on the answer it can also be liberating and empowering.


Question: What is the proper balance between being a caregiver and living a life that is in balance?

There, it is out in the open. The question centers on how much of your life do you sacrifice to fulfill a feeling of responsibility to an aging parent or other relative? Where is it appropriate to draw a line and not feel guilty about your decision? How do you know if codependency affects your decision and relationship?

I wish I could tell you I found a web site that has the perfect answer for everyone. I would love to give anyone struggling with this problem the easy solutions to answer the questions so everyone is happy. Unfortunately, I didn't, so I will have to give you my best shot at an answer.

The question, and the resolution, are very personal to me. My almost 90 year old dad lives alone in an assisted living apartment. He has 24 hour help available for emergencies and regular housekeeping. He eats his meals in a dining room that is just one floor down the elevator, or he has a mini kitchenette if he chooses to prepare something he bought at a small grocery center across the parking lot.

He has no hobbies or interests that fill his time. As he has gotten older and more time has passed since his wife died three years ago, his world has continued to shrink. Now, a typical day is spent reading and napping. He doesn't make friends So, the lunch time visit from Betty and me every 7-10 days is a big deal to him. Even though we don't talk much, he does relish the time together. I handle his finances, get his prescriptions refilled as needed, take him shopping when he needs basics like laundry detergent or deodorant, and provide transportation to doctor appointments. The place he lives does have shuttle service for these needs but he absolutely refuses to use it.

And, therein lies the problem. Betty and I have plans to be RV traveling over two months this summer. In 2015 we want to be on the road even more. I can schedule his doctor visits for when I am in town. I can get one of my daughters to pick up his pills if he needs refills while I am gone. I can help him stock up on enough supplies to last 2-3 months. But, I can't replace the "face time" that is so important to him.

Betty and I have talked about this dilemma quite a bit for the past few years. Up until now, we have chosen to not be gone for more than a few weeks at a time. But, last year, we finally came to the conclusion that being tied so closely to him meant we face the very real risk of running out of time and health to do what is important to us. I am pretty sure he would want us to not sacrifice some of our dreams either.

So, we are going to travel. We are going to be gone for months at a time. To make that separation as easy as possible for dad we will leave him with most of what he needs for the time we are away. We will call often, make sure someone else in the family is available for his shopping needs, and depend on the nurses at his facility to keep a sharp eye on him.

Our solution works because all of our family lives in this area and dad lives in a full service retirement community. There are backup people when needed. But, I know not everyone is so lucky. What if the parent(s) live far away with either no family nearby, or family that can't provide the level of involvement necessary due to declining health? If you have been providing some level of care and involvement but feel you really need time to live your own life, what do you do? How do you balance a commitment to a parent with your needs? Do you have strong feelings of guilt for not being a more active caregiver? Have you asked the person you are taking care of how he or she feels about the situation?

While I did not find a web site that provided all the answers, I did locate one that  can help us all think through our options. With the intriguing name of Tiny Buddha, this site had a list of tips on how to balance our self interest with our desire to sacrifice for others.  Here are some of the better thoughts, as well as a few ideas to bring things back into balance. You can check out the entire article, along with an explanation of each of these points, by clicking the link at the end of this post:

*Too  much sacrifice can harm relationships.

* Excessive giving can create internal resentment.

* Sacrificing is not always helpful.

* To truly give yourself, you need to take care of yourself.


Now, here are a few steps to find the best balance for you:


1. Establish your reason for imbalance.  Are you overextending yourself to feel powerful? Or to please everyone? You need to figure this out.
2. Take a piece of the pie. You can’t give everyone in your life 100 percent, so you likely give your parents, friends, and significant other a percentage of your energy. Consider a piece of that your own, and honor that in your choices.
3. Think of taking as another form of giving. Everything you get from giving, the people who love you will get the same if you give them a chance to reciprocate. Why not allow them the opportunity to feel helpful and important, too? 
4. Make attempts to repair unbalanced relationships.  you need to address this, either by asking for what you need when you need it or initiating a constructive conversation.
5. Make a habit of expressing your needs. If you state your expectations, it will be easier for people to meet them.

Lori Deschene, the founder of Tiny Buddha, makes some excellent points in this article. I encourage you to check out the full article and then see how it may apply to your situation.


This post is much longer than most of my recent efforts, but the subject is important and worth the extra space. So, what can you share? Has any of this helped you clarify your situation?


We all look forward to what you have to say.



51 comments:

  1. Wow, a very powerful post! I relate to this on so many levels. Even though I come from a rather large family, I am the principal care giver for my elderly mother and also for another family member who has some cognitive and emotional limitations. For various reasons (proximity, job responsibilities) the burden has fallen mainly to me, with occasional help from some of my siblings.

    I'm pretty sure I fall into the category of trying to please everyone, and not wanting to impose on others. Putting other's needs before my own comes easily to me, but there is always a price to pay. At times I find myself fighting feelings of resentment, and then guilt for feeling resentful! Your post has given me some real food for thought. It's really about what is often called cognitive restructuring; changing your thinking about an issue, which in turn should lead to a meaningful change in behavior.

    The other complicating factor that perhaps some of us experience, is when the recipient of your caregiving is unwilling or unable to show any acknowledgment of what you are doing for them. However you soldier forward, because it is the right thing to do. Intellectually I know that kindness to others should be unconditional, but it does make it that much harder when the response is one of bitterness or anger.

    We're leaving soon and will be away for 2 months. Lots of preparation and planning mean that others will take over my responsibilities while we're gone. It will be a hardship and sacrifice for them, and I do feel bad about asking for this help. But your post gives me a different perspective to consider. All too often the caregiver puts "self" last on the list!

    I can see myself coming back to this post many times for inspiration and encouragement. Thanks Bob. Once again you have provided your readers with a guidepost in this fabulous journey of retirement!

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    1. Thanks for the kind words, Carole. It was not an easy to post to write because it is personal and there are no clear cut answers. I have been struggling with this issue with my dad for 3 years. Before she died, mom needed us up to three times a week, so this struggle has been part of our life for at least 5 years with no end in sight.

      Betty and I realized that our lives had been partially put on hold during these 5 years and at our ages we were running a real risk of missing our window of health and ability. It will not be easy to leave dad for an extended time; I am sure I will feel some guilt and will worry. But, I am comfortable that this is best for all of us.

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    2. Carole, I could have written your post! Always a people pleaser and now I'm the caregiver for my parents as they have moved to assisted living. My sister works and the one time that I asked her to take my parents to an appointment, she replied that she couldn't. My husband still has another year to work and then we would like to travel to Arizona for the winter, if possible. My sister will have to step up and help at that time, although I don't think it wll be too willingly. This is one thing that my husband and I have struggled with...when do we take time for ourselves and enjoy our time together, while caring for aging parents. We will see how it plays out when hubby finally retires.

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    3. You may just have to announce your intentions and tell your sister it is her turn for awhile. She may not like it, but family requires doing things that are inconvenient or difficult from time to time.

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  2. Bob, this post touches on so much that is going on in my own life and will be and is very helpful. Carole, your situation sounds so familiar and your comments are very helpful. Really is and can be an internal struggle for balance. I could go on and on....but will just say most of us experience this at some point and it is so good to have others to share this with.

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    1. Sharing our concerns and "solutions" helps us and others. It is good that we feel comfortable and safe enough with each other to share some tough stuff.

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  3. My Father always told me in the business field that if you want the boss to listen to you, you first must get to know the secretary. If your parents are in a care facility, get to know the people that work there from the waiters, receptionists, nurses, cooks etc... Share a joke or even just a smile when you visit. Let them know how important they are in the life of your loved one. Dedicate some extra time during your visits with your loved one with some quality time with their caregivers. This goes for other family members also. Don't let the time be spent talking about all of the problems that the care receiver is having. Think of some of the good thing happening in their life or in the "good old days." Also a thank you or your appreciated card does wonders! I love getting a personal card in the mail instead of nothing but junk mail. Thanks Bob for all of your posts.You always seem to touch important parts of our lives.

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    1. Thank you, dear, for being a willing participant in our "balancing act" with our commitments and desires.

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  4. Bob you are addressing a very important topic that many of us will face at some point. My folks are still independent for the moment but at 82 they are definitely slowing down and it may be just a matter of time before they need some level of assistance. I feel for you and your family - you love your dad and want to do all you can for him. But at the same time there are only so many hours in the day and there are numerous other very important people in your life that need your time and attention.I support you in your decision to do your traveling and agree you are fortunate to have family in the area. Good luck and enjoy your well-deserved travels! :)

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    1. This topic was the one that was most requested when I asked for ideas at the beginning of the year. It is something that many of us are facing now or will face at some point. I guess the decision on how to handle it is very individual; there is no right or wrong answer.

      Thanks, Dave.

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  5. When addressing the caregiver role, whether it's as a paid caregiver, i.e. nurse, or mother or child/parent roles in the parents' elder years, I think of what we're told on an airplane - put your oxygen mask on first before assisting someone else. I know it's easier said than done, but I believe that with practice we can learn to replenish our giving place so that we can give with vigor and without resentment. I'm watching my cousins scurry to manage their lives with jobs and children, etc while managing their mother's palliative care 2 hrs away. I see many circles and communities rise to the challenge. I've come to learn that there is usually help if we would only ask.

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    1. I like the airplane analogy...it fits nicely. I also agree that there are usually resources available to share some of the burden of caregiving. It may take work and probably costs something, but in the long run the expense may be money well spent.

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  6. While both my parents have passed, we are dealing with Deb's 85 year old Mom having to live with us starting last Sept. It has been quite the balancing act for Deb, and she has been running the risk of burnout. But she finally realized that we have to have our own time, so we have and will be continuing to squeeze in vacations. In addition, she will now be taking her mother one day per week to adult day care, to have one full day pretty much to herself. When we vacation we also pay someone to come and stay full-time at the house, since our options are very limited (no family nearby, etc). By letting go even for short periods of time, I believe Deb can keep the current situation going longer than she thought, giving her mother a better environment at the same time.

    And I like Mona's "oxygen mask on a plane" analogy. True not only in caring for an elderly adult, but in many other cases as well.

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    1. I imagine Deb struggles at times with this situation. With no close family it must be harder to turn over the care of a loved one, if even for just a short period.

      Follow up question, Chuck: where do you find someone to stay at your home and care for your mother-in-law? How do you check this person out and be sure you have a solid caregiver?

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    2. Bob.
      We did it the old fashioned way - put out feelers to friends that we trusted, and one came back with an exceptional woman who did this type of work. It was a leap of faith but after Deb spent some time with the woman leading up to this time, we basically turned over Deb's Mom and our house to this woman when we went to New Orleans for a week at Christmastime. We stayed in touch every day, and it worked out great. We basically lucked out. She is able to make a pretty good buck by staying at our house, and we are able to get away without any undue worries.

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    3. You were lucky. I wonder if there is any type of database, either national or local for this type of qualified and veted helper?

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  7. Yeah, we're living this, too. We recently had to decide whether to move dad to asst. living floor in his bldg., which would be less $ than we're paying his 12hr. a day care giver, but it was totally restricting and we knew it would put him in a depression. Since he's been diagnosed with congestive heart and being 95 we decided to leave him where he is. The projected life span after a congestive heart diagnosis is a year, at best. He deserves to feel a little freedom and enjoy, as best he can, what time he has left.

    It is gut wrenching, for sure. And the entire time I'm thinking about what I would want. I think you now where I stand on that. We make our choices for him, from a place of love, but we also have to keep the perspective of how it affects our lives and the time we have left on this earth, too.

    I love Lori and Tiny Buddha! I did a guest post on her site a few years ago. She is a very smart and motivating force!
    b

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    1. My mom made it almost two years with congestive heart failure but was really just hanging on for the last 9 months.

      In the majority of cases I firmly believe the person we are caring for would not want us to put our life fully on hold during this time. I also am sure that what we do for them is deeply appreciated. If we can accept that analysis (hopefully not wishful thinking on my part) then both sides of the equation get what they want and/or need.

      This was my first exposure to Lori. I agree: her insights are well worth the read.

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  8. Great post, Bob. I am a lurker and haven't commented much, but am approaching retirement and have a retired hubby. So a lot of your topics are connecting for me. This one really hit home.

    I watched my mom act as caregiver for her mother for years until my grandmother died at 93. Although she has many siblings, my mom was always the one grandma relied on. It was very stressful for mom and for my dad, and the one time they moved grandma into their home (we were all grown and married by then), my mom wound up in the ER with chest pain...stress. They ended up moving her to a small apt nearby and visiting daily. There were days when my dad visited because he wasn't as emotionally involved and more easily dealt with my grandmother's loneliness without feeling he needed to stay and fix it somehow.

    Now my mom is in her 80's, still spry, and living independently with her husband (my dad died 12 years ago). I can see the day coming when she might need care, and it is a concern because I live a full day's drive from them. I have brothers near her, but I am her only living daughter. Given her history of care taking with my grandmother, I feel I will be the one to do most care taking for her. So I do think about it, and this is very helpful food for thought.

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    1. Glad to help, Hope. Your situation will require some real sacrifice and adjustments on your part. I wish you luck and sincerely hope you find a mix of caregiving and self preservation that works for you and mom.

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  9. We have the big decision sort of in the extreme. 8 years ago I built an addition for my wife's mother, then 80 and finally could no longer work (yes, was working retail at 80). I retired 2-1/2 years ago and we're stuck here, my wife is pretty much 24-7 caregiver. We are quite well off financially but don't care to spend down our saving to place her in private care, so it would be Medicaid and we know what that would be like. As she's aged she's more dependent, never was appreciative, and show's little respect for her daughter. Falls many times because won't use walker as instructed. Wife's brother would take her for our trips but that has slipped away as her care has increased. To make worse, our daughter and 4 grandchildren in London, son is in Tanzania. We were able to go there 2-3 times a year but brother in law just can't handle her any more.

    So, at some point do we place her in a Medicaid facility with all the guilt, or do we just "wait her out" to put it not so delicately. Meanwhile, we see her deterioration as our future and know that our great health won't last forever.

    My wife is exceedingly patient and I really admire her abilities to deal with it. We're very close but it can be a struggle. So, while we have a ton to be thankful for, we're still waiting for the retirement to open up to the travel and freedom we worked so long to save for.

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    1. Question for you: are you willing to forgo some of your financial resources in exchange for the freedom to travel a bit and enjoy your retirement? Sometimes there are tradeoffs that you have to consider, if for no other reason than to give your wife a break.

      I would think a Medicaid facility would be the last choice you'd want to make. While they do the best they can, the care in such setups is pretty poor and not likely to get any better as budget cuts in social welfare are the order of the day.

      "We're still waiting for the retirement to open up to the travel and freedom we worked so long to save for" doesn't sound as if it will happen with your present approach. Personally, I would choose enjoying some of the fruits of my labors even if it meant downsizing my overall lifestyle a bit.

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    2. Friends have counseled that perhaps we should seek help, that maybe the money would be worth placement. Bear in mind we have established ourselves so that we are basically self insured for OUR long term care. We will NOT allow ourselves to become a burden to our children. Once placed, at what, $5-8k a month or more, how long would that go on? That of course is the big question either way we go. Even though she has little or no appreciation for our efforts, to say time's up and you're going into a facility (Medicaid or on our nickel) would be very difficult. As to respite care, we only recently have no access to brother in law as resource (they both work) so have considered it. But to move her somewhere for 2 weeks or have people in our house (ugh) just seems not worth it. So we are pretty much just accepting it and concentrating on enjoying the things we can. We don't have a bad lot, truly, it's just aggravating that we're on hold and it's not appreciated.

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    3. Your response has raised another very valid issue worth a post or two of its own: how to prevent being a burden to our children. Obviously, you have a tough balancing act between the person you are caring for, you and your wife, and not putting your kids in the same position you find yourself.

      I appreciate you honestly raising some difficult questions. In your first comment you raised one of those things all caregivers probably think about but don't often talk about: can I hold it together until she or he dies? That cuts to the core of the emotional landmine of caring and death.

      "Enjoying the things we can" seems to be your lot in life at the moment. Thanks, Alan, for addressing some of the messy parts of all this head on. I am sure you have given others much to think about.

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    4. I had the same impression of Medicaid facilities but have discovered that there is at least one good one... so maybe there are more. My sister-in-law is 90 years old and has Alzheimers, though it is not advanced. . She lived alone as long as possible but then broke her hip. She went straight from the hospital to a nursing home as a paying patient. Her funds were exhausted rather quickly and she went onto Medicaid. I think it would have been difficult to get her into this particular place if she had tried to enter initially on Medicaid. Also her son was advised not to take her from the hospital to his home or it might be questioned as to why he could not continue to care for her. I don't understand all of that because I don't know much about Medicaid. She does have to share a room but the room is large and her roommate spends most of her waking hours in the areas designated for socializing. It is clean and nice and the staff is excellent. She mostly reads and watches TV and she has a lot of visitors (small town friends and family). She is quite content there and I think well cared for. I hope budget cuts won't change things.

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    5. That's good to know, Judy. The only thing I know for sure is someone has to exhaust almost all resources to be covered by Medicaid, but the movement from Medicare into Medicaid is something I was unaware of.

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    6. She exhausted her personal funds as well so she did not really go straight from Medicare to Medicaid, but she did not have a lot of money.

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  10. Hope and Allan brought up,some very important concerns of mine. One is- why do they have to be the only people doing the work? Brother cannot handle it? Then he needs to put in some money for the long term care. Brothers aren't expected to chip in? Have they been asked? Has someone set out a schedule? How about those grandchildren? How are they involved?
    How are we setting ourselves up? If we get so burned out to see our parents as a burden (not really any of you- but think collectively), who will come and visit us? I already know it will be robots changing my diapers (I hope I don't live that long). Sure we can smile and say we will be self sufficient, but what if we are not? I'd like to see my grands.
    I visited both my grandmothers weekly in high school and most of college. Now there is Skype and FaceTime (which caregivers can help with). There has to be some interesting ways around the situation of loneliness. My sisters are on a phone rotation schedule right now and one does the books. Next step?
    Not looking forward to making these decisions about mom...or me.

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    1. If someone can't physically help with the care of a loved one, then financial support is a very appreciated way to pitch in. Good point, Janette. It may not apply to Alan's situation for reasons particular to that family, but your question does bring to light an option that should be explored whenever possible.

      Janette, you always cut to the heart of an issue. I appreciate your thoughts and questions that demand consideration.

      Robots changing diapers? I don't even want to think about that.

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    2. Janette,Those were excellent thoughts about getting family members (young and old) involved any way they can. I also like the "schedule" approach. If it's on the calendar it gets done. People have good intentions and might say they'll call or go over next week but then the visits or calls become few and far between. One concern may be if there is dementia or memory loss involved be prepared for the care receiver not to know who you are sometimes.

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  11. I walked this tight rope for many many years. In hindsight I wish I had been able to do much more. I am an only child and my children had grown and left home.

    I think you need to take time for you and Betty to do the things that you can right now. You have struck the perfect balance if that helps any.

    It is a couple's relationship that suffers the most I think. If the parent is the wife's it is a lot harder. This is a topic that needed discussion Bob. Thank you.

    Barbara

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    1. I'd love to learn how you and Earl handled this situation the next time we get together. It is a subject with no simple answers.

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  12. I've been in the caregiver role, spending each day with my dying mother in the time before morphine pumps, giving her morphine shots at regular intervals. Later, I was sandwiched between my father, declining into dementia, and my youngest daughter, then a teen and dealing with multiple health issues, including a seizure disorder. Now, in my early 60's, the roles are reversed, so I can add my perspective as the person requiring caregiving and not the caregiver. I have a chronic and progressive illness that has changed my life and my husband's. My abilities and pain level are not predictable day to day. Fortunately, I work as a writer for a website, from home, so I can continue working although on a reduced schedule. However, all errands are now on my husband's shoulders, including all the grocery shopping and sometimes, on the days when I can't drive, driving me to many doctor's appointments. Physically he helps me, such as catching me when I suddenly become unstable when we're out. If our daughters need help with childcare, he's the one who does that now, too. When he had surgery last summer, one daughter stayed with me to bring me back and forth to the hospital. This is a huge change in both our lives, because I was an extremely active, even athletic person. Gone are the days not so long ago when we mountain biked on the single tracks or kayaked down the Colorado. That means that I pay special attention to urging him to get respite. In my eyes, he needs lots of time to work on and fly his RC planes and helicopters, go to lunch with his friends, and enjoy other activities, even if it's one of those days that I can't participate. He has never liked traveling, or I would be urging him to do that. I've made it clear to him that I want him to do those things that bring him joy. I've told him that, if I need more help than he can provide, I will choose to go to a facility that can provide that. Furthermore, I have frequent talks with our two adult daughters, telling them that it is my desire that, if a time comes when I am alone and no longer able to care for myself, they are, without guilt, to make whatever decisions need to be made so that they can maintain their own lives. That includes a lower-cost facility if I should be running out of money, and I've told them that, too. Our joke is that I'll be fine if they can bring me warm brownies now and then and play Debussy's "Prelude to the Afternoon of a Faun" or arias by Jussi Bjorling my room. I say it often enough, however, that they know that I'm serious. I hope. To be a burden to them would undo everything I wanted to do with my life. I can't tell you whether your father craves more interaction with you or whether he's comfortable with his introspection and, perhaps, quiet reexamination of his memories. I can't tell you how I'll feel about that in the future. All I can tell you or my family members is that now, when I am still fully capable mentally, I do not want to ever be any more of a burden than I already am.

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    1. Your comment brought tears to my eyes and joy to my heart. You are an absolute inspiration, Linda. You are brave, compassionate, loving, realistic and caring in one incredible package.

      I can only pray that you continue to bless your family and us with your amazing presence and strength as long as you can. Bless you.

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    2. Now I'm embarrassed and tempted to counter with assurances that, while the debilitation is progressive, medications have proven immensely helpful for the time being, and I'm really okay most days and even great some, and . . . However, to deny too much out of embarrassment would be to deny the sacrifices my husband makes, and I'm not going to do that. My point was also to say that when we're faced with life-changing events, it's sometimes natural that we want to process those events and reassess our lives and our future, reassigning our priorities. Maybe that's a prolonged process for people your father's age, and maybe he's more okay with that than you're imagining, since your age, personality and interests are different. Then again, I don't know him and don't know the degree of depression he might be suffering.

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    3. Your attitude and concern for others while you have your own struggles is what came through so clearly in your comments. Embarrassment would be the last thing you need to worry about.

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  13. When my mother in law fell and broke her hip and some other bones she could not be at home any longer, or in any one else's home. Her boys had to work with an elder care attorney to help them get her into Lutheran Care Center, a lovely facility that accepts medicare and then when Mom's assets are spent down, she goes to Medicaid.I have visited her there..it is very clean, the staff seem caring, they have an ice cream parlor, a library, a movie theater, and a chapel.Piano playing and singing every Saturday morning.. many other activities. She requires nursing care.It's paid by Medicare and soon,Medicaid.I tihink it takes some work to find the good places but it is possible.Here is Arizona I was researching care homes in case she wanted to move here but she did not.They are a more affordable option sometimes too.

    The year before, when Mom was at home, with Dad who was still ambulatory and able to help a little, they spent their retirement money on a live in home health aid. (Dad passed away soon after she broke her hip.) There is nothing to leave the kids but that was no longer important.

    At one point when they were both in better shape they had the money to buy into an assisted living facility where life long care would have been guaranteed but they refused to leave their huge home. Hard stuff. Brave of you to discuss! I support you and Betty getting some real quality time and travel in this year Bob.

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    1. Thanks for the story, Madeline. There are several important lessons and ideas here. While the idea of a managed care facility is not something Betty and I are looking forward to we will not subject our children to years of taking care of mom and dad and putting their lives on hold.

      We are giving serious thought to moving from our already downsized home in Scottsdale to an even smaller condo/town home type of setup in Tempe sometime in the next few years. That will likely be our last home before moving into a care community in maybe 12-15 years.

      But, for now, there is too much living to do to even think too far into the future. After all, life is for the living, right?

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  14. I'm in Britain, so things are a bit different here. However, I recently reached retirement age and duly retired and went slap bang into two different sets of assumptions. Mine...that I had been planning/saving/looking forward to my retirement for years (work life had NOT been a pleasure to me at all and was only too glad to escape from it at last) and my parents' set of assumptions that I would be an unpaid carer to them if required. I had just naively assumed that people were "orphans" in the main by the time they reached retirement and hence had been making all my plans on the basis I would be too. I'm not - both parents are still alive and not well. I've been "on call" for over 30 years in my case (as that's how long one of my parents has been ill for) and that, of itself, has been wearing. Add the fact that my mother and I don't particularly get on well, as she is SO hypercritical of everyone (but particularly me it seems) and I am understandably seriously wondering whether she "held me back" (rather than encouraging me to fulfil my potential) precisely in order that I wouldn't have much of A Life and would therefore "fall into" being an unpaid carer to her if required. I've gone ahead and got on with My Plans (though these have included moving quite some distance away) and I don't honestly know how things are going to pan out all round, but I just couldn't put my life on hold any longer and was very much feeling "If I cant lead MY life now, then just when can I?". I guess, in my own case, I'm also well aware that any "caring" could only be one way, as I don't have any children myself (my choice) and therefore have formed my own opinions/devised my own strategies for independence and therefore can't really understand why they haven't done so and I am supposed to facilitiate my mothers choice not to make herself into An Independent Person and make her own arrangements.

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    1. Thank you for your input from Britain. One question: does your national health care system made allowances for advanced care through public facilities or in home nursing help? Are there ways your parents can be cared for without you giving up so much of your life?

      I hear the pain and frustration in your words and understand your need, after 30 years, of going after your plans. I doubt there is a reasonable person who would not applaud you for what you have done for so long and now taking steps for self preservation. There is a limit to self-sacrifice.

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  15. No in a word. We have old peoples homes here in Britain, but it is difficult to find a decent one. They are very expensive, costing some hundreds of £s a week. The cost of these care homes is only covered for us IF we have a pretty low level of assets of our own (including not owning our own home). Anyone who owns their own home knows that their Local Authority will make them sell it to fund their own care once their savings run out. Basically, except for people with plenty of money of their own and accordingly able to afford the best-quality care homes, then the situation is pretty unsatisfactory for the rest of us. Basically, most of us, just cross our fingers and hope that "us and ours" never become unhealthy enough to need a care home. Social Services here have a tendency to do their darndest to turn anyone they can get their hands on (adult "children"/friends/neighbours even) into an unpaid caregiver, rather than meeting the bill to fund carehomes for those who don't have the assets to pay for their own care. Some people have awful battles on their hands to ensure that their relatives are able to go into a decent carehome if needed and, if the caree owns their own home, then that caree can mentally "kiss goodbye" to the money tied-up in their home. It is far from uncommon for people with relatives needing care and requiring it to be funded by the State to find they are made to be an unpaid caregiver instead (even if it wrecks their own life/finances/health in the process).

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    1. Thanks for the follow up. It does not sound like a good system. Unpaid and forced to be a caregiver cannot produce good results.

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  16. My mother is 92 and in a nursing home. She is frail and has poor short term memory. Although she is able to feed herself,she will frequently wait for someone to feed her or just refuse to eat. I feel that I must visit almost every day to make sure she eats. It has become quite exhausting-though nothing like the problems of the person in Britain.
    It is difficult to find the right balance-but at some point we have to live our own precious lives without feeling guilty about it.

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    1. Does the staff at the nursing home not feed her, or will she only eat if you perform the task?

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    2. Yes they do try to feed her. Sometimes she will let them and sometimes she refuses. She is more willing to eat for me. Her behavior is not predictable. There are also times when she does feed herself.

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  17. Tired of hearing from all of us on this issue?? Well,another short (!?) story-- a very dear friend of mine, unmarried, no kids, age 73 and still actively working in crisis care and social work, recently diagnosed with macular degeneration.No symptoms (yet) but the future may bring unpleasant changes and even dependency.She had originally planned to share a home with a friend and move to California in a year or two.Now, she has re arranged her plan.She will be buying into a care community, a small townhouse in a Tempe care community, where, after the buy in, your monthly fee is guaranteed and all your health care needs too. There is a hospital and a nursing center i on campus. If you WAIT TILL YOU ARE SICK to buy in the fee is MUCH HIGHER. She is basically a well woman at this point (The fees go way up with advancing age and with Parkinsons or any dementia, or blindness,etc.) so the buy in is much less NOW before any progression of her problem may occur.. She has made the brave decision to alter her plans and at the end of this year move into this community.Some of the residents in the apts. and condos do still work , she certainly will!! There is an on site gym, a indoor pool, club house, many many services and activities.I visited with her and went through the presentation.. I was quite impressed.If my in laws had spent their money to do this when they were pre-stroke, and pre- broken hip, EVERYTHING would have been soo much smoother for family and they would have been safe and surrounded by a community.Instead, my Mom in law is in the nursing center.. well.. just a good lesson to look at all the options, and sometimes make the harder choice which might work better in the long run.The community in Tempe is Friendship Village.. it was soo nice.. a real neighborhood, not a "care center.." Deciding to make changes BEFORE serious stuff sets in can save money and provide more security--hard to do, but.. we can learn from one anothers' stories!

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    1. My parents moved to Friendship Village about 9 years ago and my dad still lives there. They decided to move in before it was needed, knowing they did want their three sons to worry. Within 2 years of that move mom developed macular degeneration, broke some bones and began the decline that lead to her death in 2010.

      Friendship Village was originally founded by some retiring ASU professors who wanted a place that kept them stimulated, both mentally, and physically. ASU still has several courses on campus each semester as part of a life-long learning program.

      While not inexpensive, FV has proven to be a godsend for mom and dad and is probably where Betty and I will end up.

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  18. P.S. I am in awe of the folks commenting here, who have given, and are giving so very much to needy family members. Take care of yourselves!!!!!

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    1. This was clearly a subject that touches a lot of nerves and is one that deserves rather frequent revisiting. Like you, Madeline, I find the courage and dedication in these comments to be inspiring and very helpful to us all.

      I haven't used this in awhile, but clearly this blog has the BRITW (Best Readers In The World)

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  19. We have places like Friendship Village here in Britain. Specially built little community of homes. People buy one and then stay there with similar age group people for the rest of their lives. Some of them are rather nice. But most of us can't afford the costs involved. The homes in these places are very dear, compared to other houses nearby, and then there would be the "service charges" thereafter (also high). At a lower price point are things like McCarthy and Stone homes and the like and these are rather more affordable to buy and many of us could afford the upfront cost of them (BUT....they are very small and its necessary to throw out many possessions to be able to "fit into" them as a unit of housing and they also have high "service charges"). Hence, most of us stay put in our own homes - which we can afford and know that service charges don't apply (barring those - much lower level - ones applicable to people living in leasehold flats).

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    1. Places like Friendship Village are quite expensive, both from the cost of "buying in," and the $3,200 a month charge. They are not a solution to the problem except for the well-to-do.

      We've all been hearing about the 1% recently. Places like Friendship Village are probably affordable by only the top 10-15%.

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