I am wondering how many of you are dealing with aging parents. When I was young, (I was born in the 1920s), they were 'taken' in. There were 'County Poor Farms' for derelicts but no retirement centers, assisted living or nursing home facilities.
When my dad was 85 and needed assistance, we went cross country and moved him back here. We had a daylight basement home on a lake and he loved it. He was a very independent man and did well with the isolation of living in a remote spot with a couple that were both gone all day. Eventually, he failed and we found a nursing home for him.
What I learned from that was to not let it happen with my sons when my time comes. When I had my dad here, it was hard on me to know he needed 'more' and hard on him not to ask for it.
How are those of you in similar situations coping?
My experience with coping with the care of my elderly father is in the past. Although we had a poor relationship (he was abusive), my father had no one else looking out for him, so in good conscience I could not abandon him as his health declined. He insisted on staying in his own home, even though he could no longer shop or go to medical appointments himself. I was able to get occasional in-house care for him, but he was difficult to deal with. I took up the slack--and exhausted myself--until my father inevitably injured himself and was required to go into assisted living care. To place him in an assisted living facility before the injury, I would have had to force it by legal means and it would have been nasty. By the time my father died, the emotional and physical strain had adversely affected my own health. Given the circumstances, I don't know what I could have done differently. He was always a difficult selfish person, and he was so until the end.
For myself, as I age, living in a seniors community sounds ideal (much like where Luise lives), where there is an option for assisted living care and possibly nursing care. It sounds like a good supportive environment.
P.S. There was a significant change for the better in my father's behavior when he went to live in an assisted living facility: Whereas, he was able to create drama and (fake) crises when he was king of his castle, he did not have much wiggle room to act out under the routine of the care facility. What he didn't like about that, I liked a lot. It saved my hide. :)
M., that sounds incredibly difficult. Even in the best of circumstances, it seems to me the care giving is a really tough job. My hat is off to you that you took it on and stayed with him to the end. Yes, I can see that in a facility your dad would have had less opportunity to bully you. How sad that he lived in that reality. I was weary when I had my dad with me, mostly from knowing it was a poor solution. I just couldn't come up with anything better. He was a wonderful father.
Mine is just beginning Luise. My Step Father (who is my Daddy and been there since I was two) was diagnosed with Pulmonary Fibrosis a couple of years ago. It is asbestos related from his years in the Navy. The last year, he has gone downhill quickly. My Mother was healthy until a year ago, and now she is going from one thing the next. Nothing major, but the years are starting to show.
I expect in the next year or so, we will be dealing with their final years. They built their dream retirement home 10 years ago, in the country. It is about an hour and a half from us. We are in the process of selling our home and looking for our retirement home for the future. I've caught myself looking at houses with 'extra room". I have a very independent Mother who would not want to live with anyone unless she can have her own space. She cared for her parents for years, living with her Father for several of those, and like you, said she never wants to do that to her children.
I jokingly told her I would buy her a "she shed" and put it in the back yard. She'll never be able to manage their home by herself. It's big and has acres that she can not keep up, so I expect she will sell it and move closer to us. Or at least that's my hope. My hubs Mother is 83 and still lives by herself and is spunky as ever. So hubs and I both keep looking at houses with extra room in case we need to do something in the coming years.
Good for you for looking to the future, Pooh. We, too, bought a home with what is called a 'daylight' basement...actually two stories. My dad had his own entrance and a complete apartment with stairs up to our 'ground' level.
My son has created the same thing for me but I'm not interested in facing the isolation of going there. For me, a retirement community has filled my needs and allowed DS and DIL to come and go with ease. What came next for my dad, and probably will for me, was a nursing home. It's usually that or a 'wake up on the other side' thing. That's what we all want but in my 17 years in this retirement community, it's only happened to four people and we have 350 residents. Not very encouraging odds.
The flaw in our plan, as I see it, now, is that in moving to a CCRC, Continuous Care Retirement Community, we didn't factor in the distance...an hour's drive for them means they can't be my advocates and, believe me, in the best of nursing homes you need one. I was Val's, of course, and went every day so I knew what was working for him and what wasn't. Even weekly visits don't support advocacy. You can be easily fooled.
So, after all of our careful planning, I am on the waiting list to move! I'm going to a HUD senior highrise in Seattle...15 minutes from them. I have a young (to me) friend living there who is going to partner with them in keeping an eye on me as I wind down. And...I get to take my pup!
This is an interesting journey...with all of us trying to figure it out together. There are so many variables and unknowns, it boggles the mind!
Enjoy your new big city life, Luise! Sounds like a good move all the way around. Pooh, good luck w/selling your house & finding that new perfect spot :)
My DH doesn't want to think about our old age, but I'm concerned about living in the boonies when we are no longer able to take care of our property or basic needs if we can no longer drive. We should be getting our house in selling shape, IMO! DH is a little younger than I, still working, so may not be hearing the ticking of the clock like I am.
Some communities have a program called PACE which helps seniors stay in their own homes while the care givers come to them. In many cases it is less costly and better for the mental/emotional health of the seniors to stay out of a facility. My dad & his wife are in their own home again after a year in a very expensive retirement complex. They are very happy with the program. Since they are way across the continent I don't see them very often but my SM's daughter is nearby.
Interesting, P. Yes, it seems to me that not wanting to think about our normal decline is common. PACE and COPE are similar programs. In both you have to provide medical proof that you need skilled nursing home care. It is the years before the need for that kind of care arises that seem to be the most difficult to address. The years when keeping up a family home becomes difficult, as you describe. Isolation creeps in and it's often too subtle to notice for some time.
(Especially if you don't want to acknowledge it.)
I found this PACE definition on the Internet: "Programs of All-Inclusive Care for the Elderly (PACE®) serve individuals who are age 55 or older, certified by their state to need nursing home care, able to live safely in the community at the time of enrollment, and live in a PACE service area."
Staying in your own home is what my husband and I did until his dementia advanced to where he required confinement as well as care.
For me, once alone, I find staying in my own home is OK, so far.
My move is probably months off due to the length of the waiting list. I don't need any help beyond a HUD unit, a driver at times and Meals on Wheels, so far. What will make all of us feel better is my being closer to my DS and DIL.
I think my biggest issue, so far, has been downsizing...over and over again until, when I move to Seattle, I'll be living in a 200 square feet studio!
Luise, thank you for bringing up this topic as it has been on my mind when I think about my future.
You are quite right that it's important to have an advocate on one's behalf when in the care of a facility. I found that true with the multiple hospital admissions my father had; things could have gone quite wrong if I had not been overseeing the situation. It reminds me that I need to build a better support system for myself.
Luise, one thing is unclear to me: what is the "more" that you felt you failed to provide your dad during the time he lived with you?
Good for you, M., for approaching the issue when there's no problem. That's the perfect time, it seems to me.
Regarding my dad, I would like to have done more, as in sat and talked more, taken him more treats, gotten him out more. I'm my own worst critic, of course. I think a well run, viable retirement community fills in the gaps that can't help but surface when one person takes on the task like I did with my dad. Since widowed, I've been kept busy with programs and volunteering in the retirement center we chose, so family visits are fun, not obligation. At least that's how my clan says it feels to them. It feels great to me, too.
I bet your dad felt nurtured by the care and love you showed him, including him in your life and home.
Very informative topic, I was raised that you took care of your elders, right now we are on our last parent my mom. My dad died unexpectedly 21 years ago, then my hubbies Step Mom Died from cancer my FIL mainly dealt with that. Then we had my hubbys Mother, who had major health issues and just as we got everything sorted out she passed. Then my FIL had Alzheimer's that we took care of his needs to the end (7 years) by ourselves because we had a restraining order against my BIL who was Financially and emotionally abusing him. We did put him in an Assisted living facility that was an hour away so his sister could visit him, but we usually visited him 5 days a week. Then when the time came we put him in a very good nursing home 7 minutes from our house and that was a god send, we could see him everyday. And felt blessed that when he passed, he was only about stage 5 of the disease so we have good memories of him.
Now I am dealing with my mom who has Frontal Temporal Dementia (FTD) which is so much harder then Alzheimers. She lives with my brother because he bought the family home (at a big cut rate) with the stipulation of her living in it until she dies. Right now I am in the process of getting her declared mentally & Financially incompetent, I handle all the scheduling, as she can't be left alone. I am lucky on the part that my brother who lives with her and sister who lives within an hour does help out, and we have someone come in 3-4 days a week to sit with her. We will get through this too. For hubby's and my future we happen to buy a house that we can grow old in and by chance it is one street over from my sons house, things are a little better with him since we moved closer. But his wife is still cold and told me right off not to expect to come over anytime unless invited. I had to bite my lip on that one, but I did for my son. I actually pity her, she doesn't know how to live life. She isn't even close with her family anymore.
I fear more for my sons future as he has no children and they are both getting older and don't see that changing and being a Nana was my second life goal after being a mother( always wanted a big family but wasn't able to). So my new thing I say is I am going to adopt a pregnant teenager, I will get me a grandbaby one way or another. Son doesn't like that, or he gets jealous when I take care of my grand nieces and nephews over vacations and such. Its like I am spending money on other people and I should be spending it on him. Not my problem, it is his to deal with. After finding this forum 2 years ago and reading though all the post and learning from everyone, I realize that it is their problem and not mine. And there are plenty of people who want to be with me and receive my love and what I have to offer.
Good luck with your move, I am sure that it will be a good one since you will be much closer to family. It does make a big difference.
I've been thinking about the importance of having family and friends as a support system. I'm concerned about a good friend with multiple medical problems, including some that restrict her mobility. Over the years, I have watched her slow physical decline. She has always been a generous person in all respects, mostly not reciprocated when she needed it from others. Recently, she has made some good changes and has moved closer to her AC at their urging, but is further away from friends.
What pains me is that her AC are resistant to helping her when she needs it, most often when she is ill. I have encouraged her to be assertive in asking for help since they live nearby and are young and able. I remind her that what she can do with great effort, her AC can do quite easily. I did not appreciate her reluctance to ask for help until I witnessed an interaction with the AC. One AC refused to do her a favor of getting something at the store because AC did not want to "enable" her. This was said to her as she lay in bed, having one of her bad days. I was shocked and had to leave the room before I said something I would regret. Afterward, my friend explained she felt AC were in denial of her physical limitations and they would make unrealistic recommendations for her health problems ("get more exercise").
I have also suggested to my friend to start utilizing available services such as ordering groceries online and having them delivered to her door, but she has resisted doing this, even when she is low on food or medication. I'm not sure what that is about, but perhaps she is in denial herself.
I expect there will be a tipping point when better support will be needed for my friend, but in the meantime I see her struggling.
Whereas younger able-bodied people may not be aware/sensitive to their elders in need of help, I see mature women stepping in quietly and lending a hand where needed. Such a network is invaluable to have and has a kind human face on it that social agencies may not have. I hope I can do that for others and that it's available when my time comes to need it.
What a moving response, TH. Even though I was still employed, or maybe because of it?...I feel I did a better job with my dad than I did with my husband. I think perhaps I was able to see my dad winding down as a normal process and his dependency on me natural. With my husband...he was my support, my partner, my peer. His winding down broke my heart and eventually left me alone.
You have gone through it over and over again in different situations and from my point of view, have done an incredible job! What have you learned from it that you might be able apply to your own possible preparations? Any thoughts on that?
M., your observations regarding your friend and her adult children are so astute. My son has been willing to go over my Advance Directives with me and help me to downsize prior to moving closer to him and his wife, who live 50 miles away. But I'm pretty sure he still sees me as indomitable...if not immortal...deep down, on some level.
The idea that your friend may also be in denial is probable born out by her refusal to set up any support systems that reflect aging or illness. I live in a HUD studio to stay within my meager, S.S. budget but also to have less housework to do or ask to have done. My medications, only two plus some eye drops, are delivered by the local pharmacy. I have DART that will pick me up here and (eventually) deliver me where I need to go. Meals on Wheels comes once a week with my entree selections plus fresh fruits and vegetables, Milk, rolls and butter. (I stopped driving five years ago at 85 because it seemed wise.) I have a Library of Congress Talking Books player and my books of choice come free in the mail. I honestly don't think any of these programs devalue me or my ability to function responsibly and contribute to others.
I see in retrospect that the error in judgment my husband and I made in planning ahead was only one of us would have an on-site advocate when needed. The survivor would be too far from kith and kin to have that very vital protection. We picked a retirement center on 90 acres of woods because that was what appealed to us. Our AC live in Seattle. I have chosen a senior facility 15 minutes from my son and his wife. Because it is HUD, there's a long waiting list. It will be fall or winter. That's OK, I don't need it now, not yet, but...
I appreciate all the resources mentioned thus far.
Being a pushy (aka loving) friend, I got some items for my disabled friend that she would not likely have bought herself. One item is a grabber that allows her to pick up items off the ground without needing to bend over. She loves it.
My friend has pushed through pain and fatigue for many years, and I think she just continues to operate this way--at some cost to her. I don't think it prevents her from doing things she enjoys most, like visiting with family and friends, but it is apparent how strained she is and sometimes it makes her sick. In my way of thinking, it is better to conserve her energy for activities she really enjoys, rather than tiring herself out doing things like grocery shopping. I nag her periodically and sometimes she agrees.
Luise, At the time I think the choice of living arrangements you and your husband picked was right for you, sounds like a beautiful place. And now when you move you will just start a new adventure. I also think you did a much better job with your hubby then you probably give yourself credit for. We all try to do the best that we can, times are different.
Just like with FIL I was more able body then I am now with mom. It killed me at first, but I realized I have help with her and to utilize that help. All the illnesses we have been though, hubby and I have learned a lot. Like we have everything in a trust so if one of us requires Long term Nursing home care, the other person won't be left a pauper. Have all our health proxies covered. When we moved 2 years ago, we kept in mind how this house will suit us when we are 70. We will be adding a garage on soon, and instead of stairs we will be adding a ramp, so down the road if we are in a wheelchair we will be covered and other things like that. I always try to look for a positive in everything, by taking care of our parents, we learned about lawyers, conservator-ships and everything else about the law and elder care. So when the time comes for us, we will have everything in place.
Marina - A lot of people do not want to take help, they were raised not to bother then children. We found this out when FIL and SMIL had Cancer, it was a year before they told us, because they didn't want to burden us. When we finally got it through their heads that they aren't a burden, then did they start asking for help. One thing I have learned from my different illnesses is that I have no problem asking for help. But then they all might be in denial, or her AC look at her as a burden, and resent having to take care of them. I sadly know some people like this, and some that only help because they will get a inheritance. Maybe you might look up some options that your friend might have, do they have a senior center where she is at? Perhaps you can get her interested in going and making new friends that are nearer. Usually they have buses to pick people up. She also might be depressed, and that will make her pain problems worse. But she is lucky to have such a good friend in you, also you might drop her a card in the mail, that might have a funny cartoon or something in it. Shows them they aren't forgotten.
Well I rambled on long enough :-)
Yes, I think a great deal of these complex issues have to do with the personalities of those addressing them...both senior and advocate. When we have the courage to move through and out of, (not past), head-in-sand...there are options to try on for size.
To me, at the moment, isolation would still be too hard. For others it might bring comfort. One thing I see on my campus walks, is the use of TV as a 'sitter'. I don't have a TV. It has never appealed to me. I'm more of an interactive person. I check Google News so I know what's going on...but I edit and select the stories I read. Head-in-sand?
Well maybe moving to the big city you can be more active in things and places. I agree with TV, my FIL parked in front of it day in and day out. Only way to get him away from it was to take him out in the car. I do have TV but usually use it as a background noise, but I do like the do it yourself shows . I love learning new things.
I recently had a little taste of how it could be when I slipped and reinjured an old mountain biking strain in my thigh. I suddenly felt very helpless and alone! My DH was an hour away at work, my go to friends were all dealing with crises of their own, no neighbors available, not even the fire department. I had to slide on the floor to get what I needed (ice pack, pain reliever, walking stick, etc.) and couldn't take care of the simplest of chores for the rest of the day. Depressing (will I still be able to ride/walk/care for myself) and humiliating (what a dummy), not to mention extremely painful (10+)! I have an autoimmune thyroid disorder and lots of inflammation that I deal with daily, so any extra stuff I put my body through makes it take longer to heal.
My hope is that I will continue to eat right, keep up my yoga and other physical pursuits, and stay fit & healthy until I drop dead decades from now out in the garden or on a hike. However, one accident can change our lives in an instant. We just don't know. I'd rather be prepared. My DH feels I'm "summoning" bad luck by wanting to plan ahead.
OUCH! My take after living 17 years in a Retirement Center is you are summoning bad luck when you don't plan. Just sayin...
Sometimes rationalization can be head-in-sand...justified. :D
Awww...you're going to be a Big City Girl! Maybe you can revamp a remake of "Sex and the City?" Hee Hee.
I think that's an awesome plan to be closer. I know no one wants to think of ourselves as a burden to our family, but I also know that I worry about my parents being away and if they were 15 minutes away, I would feel better about being able to get to them and help if they need it. So being closer will also probably give Kirk a sense of peace just knowing he can get there faster.
We've been totally crazy bonkers. We listed our house and it sold in 24 hours! Ok, great problem to have but DH and I looked at each other and said, "Well, now where we going?" We had this glorious plan of listing the house (which we worked on two months first to get ready) and then start looking in case it sold in a month or two. What's the saying about the best laid plans? So it was a mad scramble for a week looking. But, we did find our dream place! It's a small mini farm! 3 1/2 acres, small, one level house, barn, chicken coop, goat area and goat house and detached huge garage. The acreage is fenced in all the way around. It is flat as a pancake and beautiful out there. It's only about 10 minutes outside the City, so my commute will not be bad.
And it has a 125 square foot building in the back yard. One of the prefab buildings that the man was using as an at home office. Carpeted, walled, electricity, heat and air. We can very easily add on to it (plenty of space) if we need to turn it into a small house. For the moment, it will be my craft cottage, so we will add a sink and water to make it easier to convert later if need be. We are very excited, but very busy packing, getting inspections and all the buying/selling junk.
So I'll give you guys your laugh for the day. My husband is a lunatic. Not like Charles Manson lunatic....like Robin Williams lunatic. Tons of fun and crazy. So we decided we needed to "name" our little mini farm and have tossed around names for two weeks. Here's our final decision and a design I made to turn into a sign.
We will wave as we pass, Pooh...you headed out of the city and me heading in! Even though everything is moving fast, it sounds like you're handling it. For me, there's a one-year waiting list! 'Sex and the City'? Humm...I got a new form to fill out at my dentist last week. One question was: Are you pregnant? My answer was, 'I haven't checked today'. (Not much laughter in a dentist's office, I have to do my part!.
The end of my Mother's time was the most difficult time in my life, and I have had many difficult times. It was emotional and draining and sad for both of us. On most days I wished I could trade places with her just to ease her life. I tried everything from having her live with me, to having nursing care in house, to having her in assisted care. But she was paranoid schizophrenic so nothing really worked. I have no advice to give here except to say that sometimes life is very, very difficult. For myself, I hope I will just fall over one day, before I come to the point where I become a burden to society. I know what not to do, and that is to not let medical professionals know you cannot be independent- or off to the nearest nursing home you will go. And around here that is not pretty, they are much like the old insane asylums (unless you are very wealthy)! To that I would prefer a "Logan's Run" scenario, with the age bumped up a little of course! I do not think the government should take away our choice to die if we are ready and willing or have made the decision when we were of right mind. Sometimes it is more humane to allow that choice than forcing someone to linger in pain, or without a mind. IMHO
What a heartbreaking situation. You are one strong woman. From what I have seen a good, Group Home is a great improvement over even the best nursing home. However, here in Washington, they are private pay and many require DSHS. There is also plan a called COPE that offers in the home assisted care...if...the person is aware and competent. Some are but many have dementia.
Longevity presents a lot of issues that early death used to circumvent.
Kate123, though it was very difficult, I hope you take some comfort in knowing that you did the best for your mom looking out for her well being, even though it was not "perfect." I would hate to think of being in the situation where strangers/social workers would be in charge of making decisions on my behalf, even with a medical directive in place.
Thank you both. Yes I know I did my best for the time, however in hindsight I would have done things differently. But you don't know what you don't know. Yes assisted living is available and I know of one that is fairly cheap for what they offer (private room in a very nice facility). But if medical oversight is needed a nursing home is required (law??). I have yet to see a nursing home that I would want to live in if I had a choice. It is a very scary road we follow in the end- and the worst of it for me is the not knowing what may be. I have always been a planner, and have always planned for years ahead. But at some point it all goes to chance. Not trying to be negative, but it is a reality. You may get lucky and be fairly healthy in old age; or you may have a stroke. My father had a heart attack at 48 and died instantly. I hope I am so lucky (but older when it happens), rather than take my mothers path that is. On a daily basis I do not think about it much, but every now and then when I see someone suffering in old age I feel I should take some action to prepare in some way.
I think a very important factor is having several advocates, if possible. The Advance Directives are important but I think a person who no longer can handle self-care and has to move to a nursing facility, no matter how highly rated, needs someone who sees her regularly and observes what is being done and not done. When my husband's dementia brought about the need for him to be in a locked facility, I put him in the nursing home on the retirement campus where we lived. I saw him every day and even though the facility was highly rated, there was neglect that I would never have spotted if I just visited once a week or less. Like you, we were planners but we didn't think far enough ahead to consider when one of would be gone and the other wouldn't have that kind of support. For that reason, I am moving to a HUD apartment in the city, which is not my preference, love living up in the woods. However, I want to be where I can call my son and he can be there in 15 minutes and I want someone closer than that on a daily basis. I choose the place I did because a very close, almost-daughter, lives there and will be on site. She wants to do this and is good friends with my son and his lady. It isn't foolproof, but the time to look closely and take action, it seems to me, is when I am still living independently in a little HUD studio and at 90, still able. We are all in agreement and I'm on the waiting list. Any suggestions would be greatly appreciated.
I like your plan. Up until 4 years ago my husband and I had all four parents living. Then suddenly we had a cascade of death among them, something we always feared. First my father, a week later my father in law, followed by my mother in a few months and then mother in law. We lost all 4 parents in an 8 month period. In between our parents deaths, we unexpectedly lost my sister's husband. He was only 57. It was a very difficult year. I can't imagine how we would have coped in they did not all live so close. My folks were in a very good assisted living home but as you say we kept a very good check on them. We were there several times during the week and always on the weekends when we were not working. My in-laws both continued to live in their own home they had for 50 plus years. They were close to us as well. It gave us all peace of mind we were minutes away. The dads were both 90 and the moms were in mid 80's. I agree it is so important to keep loved ones close by when the aging process accelerates. There were many changes that happened quickly and the close proximity allowed us to respond accordingly. Plus it was a very joyful time of life for us all as we cherished spending the looming limited time we realized we had with them. So many wonderful special moments and memories together.
What a huge amount of loss to be able to find full of love. Amazing!
Here is some reality!
Here is the larger text ...sorry I am not more savvy with this computer!!
Wow! What an eye opener! I have never seen it before and I do think it is so true. Thanks for sharing.....and if I click on the link it opens the picture large enough to read it. I think you did great!! Hugs!
Oh and I edited it for you :)
Thank you SL!
I couldn't see the link until I logged in, so for anyone who hasn't logged in and can't see what kate123 linked, here it is:
At youngest we're most pure.
At oldest most experienced.
But at both we're the softest at heart.
Maybe that's why those ages get along the most.
It's somewhere in the middle we lose ourselves.
Louise, excuse my ignorance but what did you mean when you said "It's usually that or a 'wake up on the other side' thing." I am guessing you mean dying in your sleep??
Anyway, the downsizing thing really makes you wonder what your life was about doesn't it? I have downsized this year and now I am saying 'why did I buy all this "stuff" in the first place. It was all so unnecessary. If only I knew then what I know now, AND, if I could just have the money back I spent for all the "stuff" I would be rich! Now when I go to community living, if that is the case, it will mean downsizing again, and again. Maybe those people buying "Tiny Houses" at onto something smarter!
My great-grandparents lived in a tiny house and had minimal stuff and many children. I Don't think they had to downsize. ;D
Yes, K., that's a saying where I live. And...I had never thought of how rich I would be if I had spent my money more wisely. Whoa!