Just starting this jouney and no idea of what to do

murphy_zone7January 30, 2008

Hello everyone...I have read almost all the posts here and decided to finally introduce myself. I am 59, retired, single, my children are grown and all live in other states. I have a disabled brother and a sister who lives out of state. By default, I have become the caregiver for my Mother and uncle. My Mother is 77 years old and in very good health. She lives alone next door to me and manages very well for now. She has no health isssues she is just slowing down, physically and mentally. The uncle who is 80 lives in an retirement community and only needs me for doctor appointments and to get him out an about once in a while and for any emergency. My concerns are mainly with my mother. I am already overwhelmed with how much she expects of me, things I think she can do but it is just easier to have someone else do it. It seems no matter how much I do, it is never enough. I do not have a life of my own I am at her beck and call 24/7 and know that if I do not get a good balance soon, it can become very bad for both of us.

What I would like to ask you guys, what do you wish you had known or done prior to taking on such an enourmous responsibilty. Are there any suggestions or ideas you can make to help me as I begin this journey that has no good end.

I want to do the right thing for my mother, but I don't want to kill myself in the process.

Thank you so much for any suggestions you can offer.

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My mother was the same way--about 12-13 years ago. If I'd let her, she'd have had me running to the store every day. I let her know that I couldn't do that. We put a pad and paper next to the chair where she usually sits so she could make a list, and I would go to the store for her twice a week. She wasn't happy at first, but soon fell into the routine. And the days I did her shopping, I'd take her out to lunch, so that helped.

A few things you want to consider--probably for the future. If you become aware that she's not taking her medications regularly, we used those M-T-W,etc boxes. I'd fill the little compartments for Mom every Sunday night, and she just had to open the right box each day to take her meds. There was a point, too, where we had to have home health aids in to help mom with bathing and some of her household stuff like cleaning, vacuuming, etc. I found that was a huge help--things she would balk at when I suggested them, she'd do willingly for the health aid. AND it meant she had more people keeping an eye on her during the week.

Always go into the dr. with your elderly relatives. It's always better to have 2 sets of ears listening to the dr's instructions. Sometimes, our older relatives don't understand what the dr. is saying (and are embarrassed to ask for amplification), sometimes they don't catch everything that's said. Sometimes, they decide to ignore the advice given. Always best if you go along.

I don't know if your mom still drives--mine gave it up voluntarily a few years back, thank goodness. My aunt, on the other hand, is 84 and refuses to stop driving--even though she's very shaky and makes me nervous out on the road.

You may want to check into your local senior citizen apartment building. Maybe mom isn't ready for that yet, but they often have LONG waiting lists (mom waited 5 years to get into her apt. We found it was an excellant place for mom when she was no longer able to maintain a house on her own, but wasn't ready to go into assisted living or a nursing home. The rent was based on income--each year mom was re-evaluated and her rent was adjusted (depending upon her income, healthcare exspenses, etc). Very reasonable place to live. And besides being a nice, economical place where many of her friends were also living, they checked on the residents daily, to make sure they were okay.

You may want to sit down with an elder care attorney, with your mom, to get her finances in order while she's still able to make the right kind of decisions. One thing I've learned, with mom dying this past November--any accounts marked POD (payable on death) can be distributed immediately. They don't have to go through probate. My mother had some of her funds that way and I was able to give them right to my brothers and sisters, and the rest is in the estate account, wending slowly through probate.

A good idea, too, to investigate your local office on aging to find out what resources are available to you locally. Maybe you don't need them now, but it's good to know what help is there for the future.

It's all a learning process, though. You'll get it all figured out. And you won't regret the time and effort you put into helping your mom remain as independent as she can, for as long as possible.

Good luck.

    Bookmark   January 30, 2008 at 1:07PM
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Azzalea gave you wonderful advice that I couldn't possibly improve upon. My one caution to you at this time is to learn how to deal with the inevitable guilt and desire to "fix" things for your mom.

In the last four years my mom has moved from her mobile home, to an assisted living facility, to my home, and finally to a memory care/assisted living facility. During this time I have spent countless hours doing everything under the sun just to try and make her life better. You name it -- I did it. What I'm trying to say is that I wore myself ragged trying to alleviate every problem or need -- real or imagined. Yet, in the end, none of it made much of a difference. The only thing I really accomplished was damaging my own health and neglecting my husband.

I know that sounds harsh, and I realize that everyone's experience is different. But, if I had it to do over again, I'd ignore more of my mom's complaints and requests. I'd take care of emergencies, sure. And real medical needs. But I wouldn't be so quick to jump in to try to "fix" things.

I think you need to set limitations. You'll have to oversee medications & doctor visits. You'll have to take care of real emergencies. You'll eventually have to oversee finances. But you absolutely need your own time -- to socialize, pursue hobbies, etc. You need to find a balance between helping your mom and taking care of yourself. And, especially if your uncle is dependent on your care too.

You're on the right track. The time to think of these things is now, before your mother gets frailer. Good luck!

    Bookmark   January 31, 2008 at 12:41AM
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After rereading your post to make sure I got the facts as presented, my first recommendation for you is to sit back and determine if you are allowing yourself to be emotionally blackmailed. This is sometimes hard to face and it's an easy trap to fall into with our loved ones (primarily because they are the people we love) - even easier for you since you live next door and to date have been available to your mother at the drop of a hat. She most likely isn't even aware that the demands she's making are out of the ordinary.

Right now - and down the line - your own health and sanity are the most important. I went through it for almost 6 years as a live in care giver for my mother who had Alzheimer's. I was fortunate in being able to retire at 55 and prepare for my "next job" as caregiver. But all my preparation was for the physical aspects of it, never giving much thought to the emotional toll it had the potential to take. I knew I would be selling my home and relocating, leaving my friends and sacrificing my life as I knew it for the duration. Now that I'm no longer a caregiver, I can look back on the entire experience as something I'm somehow grateful for and as an experience that didn't defeat or suck the life out of me.

Since your mother is in good health, high functioning but simply wearing down as one naturally does with age, it appears that her dependence on you is merely a convenience and not a necessity. If possible, sit down together and have a talk - check out the cabinets and refrigerator for available foodstuffs, etc. and work out a kind of schedule for grocery shopping or errand running making it clear that a couple of bananas, loaf of bread or quart of milk isn't an emergency. You have to try and set some limits now because as time passes, you might not have the luxury. And you're doing this now because you want your mother to remain independent. She most likely wants to be independent, too, but also might subconsciously want to tie you to her to the point where you're smothering.

If she's lonely, maybe there's a senior center that has card playing, arts & crafts, or other activities she could participate in a day or two a week. My mother just blossomed with an adult day care program that was filled with games, crafts, music and other lovely folks. But I also understand that some people simply are not joiners and that might make her uncomfortable or wary of trying new things.

Finances, POA's, wills, etc. and how they're handled are intensely personal things. POD's and Totten Trusts are all well and good things to recommend but you do have to consider a few things and none of this is one size fits all.

One thing I would do now or soon is have your name added to your mother's checking account - you never know when you might have to take over routine bill paying. Simple procedure with a quick trip to the bank.

Also, make sure your siblings are on the same page with you to the extent that's possible. For valid reasons, their participation in looking after your mother and, to a lesser degree, your uncle is limited - so you're the one in charge and the way you handle things should be respected and not second guessed. It's quite possible they're more than willing to let you handle everything.

One thing I did learn in dealing with elderly relatives over the years - the idea of "independence" gets a little skewed. Their independence is directly proportional to the amount of things done for them by others - oftentimes, the only independent thing they do is wake up in their own beds every morning.

It is a journey and it is a strange reversal of roles - children looking after parents. But my best advice is to try and set some limits now. If left unchecked, it'll only get harder for you as time passes and you really don't need to end up with any emotional scars.

    Bookmark   January 31, 2008 at 1:54AM
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Thank you all so much for your thoughtful replys. Azzalea, shambo, and duluthinbloomz4....you all gave me information that I had not thought of....I am looking to put some "distance" between Mom and me so that I will not be consummed with guilt and despair as time goes by. I have been reading everything I can get my hands on about being a caregiver, I am looking for a support group that meets regularly so I can attend, and I have been to my doctor to get help with the depression I am currently suffering.
But your insights based on personal experience are so valuable to me and anyone else facing the same situation.
You validate some of the thoughts I had about her blackmailing me emotionally, having me do things for her because it was "easier" for her, in other words "why do it myself if I can get someone else to do it" thinking.
I do have her finances in order, she does have a health care directive and a medical power of attorney.
I do appreciate the time you took to type out your responses. I have copied and pasted so I can refer to them as time goes by.
God bless you all,

    Bookmark   January 31, 2008 at 7:43AM
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Could she go into a retirement center/assited living home? There she would have others to talk to, controlled excerises, field trips, busses taking her to the shoping centers, medical etc. Our homes here do all of that.
Recheck with a lawyer that everything is in order.
Good luck

    Bookmark   January 31, 2008 at 9:16PM
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hi everyone!!
i will admit that i still read your posts to see what is going on in your lives. i will admit after 11 months i am one very lonely person. but the best advice i have received here is TAKE TIME FOR YOURSELF!!! yesterday i turned 52, it was a very hard day because it means that one year anniversary is coming up. but people tell me that i look like i have lost 10 years off my face. i was around to give Al insulin 4 times a day, i learnt how to get groceries using the express line on;y so i could be back home right away. i regret that Al relatives did not help me at all, they should be ashamed of themselves. i didn't have a break in 10 TEN years, last week my daughter and i went to the movies to see 27 dresses, i think the last show i saw except "kiddy" movies was Mr. Mom. my daughter and i are still remodelling the house - and not on tv at 1,000.00 a room. i am getting caught up on reading -- Pea Bee -- i'm almost finished T is for Trespass.
i think if it was possible and we had the money then i would have hired a homemaker that came in for 2-3 hours 2 times a week.
Al and i had wills drawn up when we were in our 20's and i had a new one made. i also added our daughter on my chequing account, had a power of attorney made up, and have already made my funeral arrangements. another thing that has been going on here, and alot, is do not let your mother open the door for anyone she doesn't know and keep your doors locked, just in the past 2 weeks here seniors have been "milked" for approx. 15,000.00 total!!!
when Al's mother became a widow about 30 years ago, she would phone and ask if we were going to the grocery store, he told her we go once every 2 weeks on a friday only and would not let her con him in -- she lived 2 blocks from a large grocery store, so i wasn't she wasn't able--it was "easier".
now i would give anything to have to rush to go to the grocery store or make that special meal!

where it was -45 yesterday!

    Bookmark   February 1, 2008 at 12:19AM
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I have been reading but not posting on this forum since I last posted in 2008. I did get my life together and am truly ashamed I did not follow up with the wonderful people on this forum. Please please forgive me.
update: I found outlets for myself, put my foot down with my mother about what she "needs" versus what she "wants" and have put limitations on what I am willing to take on for her. She is now 80 doing very well. We still have some issues to be worked out and I guess we always will. a mother/daughter, basic personality difference type thing.
My elderly uncle (84) is the problem now. He had a stroke on Feb 2 and now requires assistance in daily living activities. Long story short, he ended up staying with me for the past 6 days while I worked out getting him from his retirement home into an assisted living facility. That was accomplished yesterday and he was happy to go there. Very compliant and agreeable. Well he was yesterday, I will find out about today in a little while when I go visit.
The point of this post and bringing forth the past post is this: The past 6 days has been an extreme eye opening event for me. I can not believe how incredibly hard it was. It was only for 6 days and I knew an end was coming soon. I don't think I would survive if it had to go on for unlimited time. This uncle was not part of my life for over 40 years,he lived in another state and did not visit my mother or have any real contact even with her much less me in all that time. However, he is my mother's brother and a sad old man with no one in the world to care for him. No wife, no children, no friends, no one. He is cranky and can be very difficult, however, he is a human being and deserving of care and compassion, so I am doing what I can for him.
I have a renewed total compassion for caregivers now that I never really had before. I never realized how all consuming it was to have someone totally dependent on you and the stress it places on you.
I am not sure why I felt compelled to post today but maybe someone will get something out of this. My heart goes out to all of you who are caring for someone who can't care for themselves. I can't even begin to imagine how this would be if it was someone very close to you. Someone you had a deep emotional attachment to....words fail me.
Thank you for allowing me to return...

    Bookmark   March 4, 2011 at 7:24AM
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