Author Topic: How are you coping?  (Read 1382 times)

0 Members and 1 Guest are viewing this topic.

Offline luise.volta

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 8841
  • Luise Volta
    • View Profile
    • Wise Women Unite
How are you coping?
« on: April 19, 2017, 12:59:26 PM »
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?
"Courage doesn't always roar. Sometimes it's a quiet voice at the end of the day saying, I'll try again tomorrow." -- Mary Ann Radmacher

Offline Marina

  • Full Member
  • ***
  • Posts: 140
    • View Profile
Re: How are you coping?
« Reply #1 on: April 21, 2017, 09:57:29 AM »
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.   

Offline Marina

  • Full Member
  • ***
  • Posts: 140
    • View Profile
Re: How are you coping?
« Reply #2 on: April 21, 2017, 12:19:12 PM »
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.   :) 

Offline luise.volta

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 8841
  • Luise Volta
    • View Profile
    • Wise Women Unite
Re: How are you coping?
« Reply #3 on: April 21, 2017, 03:48:24 PM »
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.

"Courage doesn't always roar. Sometimes it's a quiet voice at the end of the day saying, I'll try again tomorrow." -- Mary Ann Radmacher

Offline Pooh

  • Hero Member
  • *****
  • Posts: 5442
    • View Profile
Re: How are you coping?
« Reply #4 on: April 26, 2017, 05:10:37 AM »
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. 
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

Offline luise.volta

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 8841
  • Luise Volta
    • View Profile
    • Wise Women Unite
Re: How are you coping?
« Reply #5 on: April 26, 2017, 10:27:34 AM »
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!
"Courage doesn't always roar. Sometimes it's a quiet voice at the end of the day saying, I'll try again tomorrow." -- Mary Ann Radmacher

Offline Pen

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 4398
    • View Profile
Re: How are you coping?
« Reply #6 on: April 26, 2017, 12:40:11 PM »
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.
Respect ... is appreciation of the separateness of the other person, of the ways in which he or she is unique.
-- Annie Gottlieb

Offline luise.volta

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 8841
  • Luise Volta
    • View Profile
    • Wise Women Unite
Re: How are you coping?
« Reply #7 on: April 27, 2017, 08:35:14 AM »
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!
"Courage doesn't always roar. Sometimes it's a quiet voice at the end of the day saying, I'll try again tomorrow." -- Mary Ann Radmacher

Offline Marina

  • Full Member
  • ***
  • Posts: 140
    • View Profile
Re: How are you coping?
« Reply #8 on: April 28, 2017, 10:16:03 AM »
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? 

Offline luise.volta

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 8841
  • Luise Volta
    • View Profile
    • Wise Women Unite
Re: How are you coping?
« Reply #9 on: April 28, 2017, 01:59:28 PM »
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.


"Courage doesn't always roar. Sometimes it's a quiet voice at the end of the day saying, I'll try again tomorrow." -- Mary Ann Radmacher

Offline Marina

  • Full Member
  • ***
  • Posts: 140
    • View Profile
Re: How are you coping?
« Reply #10 on: April 28, 2017, 02:16:35 PM »
Luise,
I bet your dad felt nurtured by the care and love you showed him, including him in your life and home. 

Offline Things happens

  • Newbie
  • *
  • Posts: 20
    • View Profile
Re: How are you coping?
« Reply #11 on: April 30, 2017, 12:14:16 AM »
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.

Offline Marina

  • Full Member
  • ***
  • Posts: 140
    • View Profile
Re: How are you coping?
« Reply #12 on: May 01, 2017, 10:44:19 AM »
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.   

Offline luise.volta

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 8841
  • Luise Volta
    • View Profile
    • Wise Women Unite
Re: How are you coping?
« Reply #13 on: May 01, 2017, 11:54:05 AM »
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...
"Courage doesn't always roar. Sometimes it's a quiet voice at the end of the day saying, I'll try again tomorrow." -- Mary Ann Radmacher

Offline Marina

  • Full Member
  • ***
  • Posts: 140
    • View Profile
Re: How are you coping?
« Reply #14 on: May 01, 2017, 04:36:05 PM »
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.