Caring for the elderly.

[Ellen]

There have been a few posts in the past, and a couple more recently, that have prompted me to start this thread. I''ve realized that I and many others on here could use an outlet to discuss, share ideas, or just plain commiserate with one another in the daunting task of taking care of an older loved one.



I lost my dad a few years ago. Being the only sibling in town, everything about his care was my responsibility. Now, I probably wouldn''t have had it any other way, we were very close. But that''s not to say resentment towards my older brother didn''t rear it''s ugly head at times. He only lives an hour and a half away, but rarely came down, even in the end. And while I realize me being here made it much more convenient for me to do everything, it would have been nice to see him try to help me out more.

I am now looking at my 81 year old mother, who is legally blind, and whose memory is slipping rapidly. Our relationship has never been great. In my eyes, it wasn''t very good at all. In her eyes, I''m sure it''s much better, as I think to a certain extent, she has no idea how she has slighted me (to say the least) through the years. THIS, is one of the major problems one may face in caring for a parent. It''s not just a matter of paying the bills, making sure they remember appts., finding a place for them to live when it''s no longer feasable to have them live in their own home. There is SO much more at play than the obvious...

Right after my dad passed away, I mean within a few minutes, I left his room (in the nursing home) to go call my brother to tell him dad was gone. One of the gals who worked there came up to the doorway and said, "Ellen, I''m so sorry about your dad, you were a good daughter". Nothing that woman could have said would have made a greater impact, or could have made me feel any better at such a difficult time. I needed to hear that, even though that''s the last thing I was thinking about at the time.

I want to hear/think the same thing with my mother. I don''t want to feel as if I''ve failed her, even though I feel she''s failed me. THIS was a real struggle at first. (I''m sure some of you can relate) But interestingly enough, the more I help her, take care of her, the easier it has gotten. What a blessing.

And right about the time I began to realize what was happening in our relationship, I read an article that confirmed exactly what I was thinking/feeling. It''s titled "The Good Daughter", by Katie Butler, and it appears in the May issue of MORE magazine. If you can find it, it''s definitely worth reading, as it is a personal account of a daughter caring for her aging parents, and the evolving of their relationships, the struggles she goes through, etc..


My hubby was a constant sounding board through my dads last year. He loved him just like a father, as he lost his own at a young age. So he didn''t mind me coming to him with all sorts of worries and problems. He even spent many lunch hours a week in the end with him after he went in the nursing home. I will always be greatful for how he helped take care of me, and my dad. I couldn''t have done it without him.

But I can''t put that all on him again, I just don''t feel it''s fair, even though I know he would be here for me. So this thread will help me, and hopefully many of you. Please feel free to post whatever you like, all thoughts, comments, suggestions, legal info, etc. are welcome. And if you just want to whine, that''s ok too. This job can take a toll.

I''m going to list the major points Katie lists in her article, and elaborates on. While I can''t type it all out, it''s pretty self explanitory.


1. Find a sympathetic ear. (look, you already have help with the first!)

2. Acknowlege the past. (the family''s relationships)

3. Assemble a team. (if you have siblings, dole out tasks, EVEN if they are out of town. AND, don''t let brothers off the hook.

) Yes, she said that, not me!

4. Make your limits clear. (do what you can, when you can, and say no when you must)

5. Be fair about work, money and power. (this touches on compensation for the hands on caregiver)

6. Consult an elder lawyer (a lawyer who specializes in the elderly and their specific issues, not some old guy

)


I really look forward to the contributions here, I feel this thread could be a real god send to many!

 

[DivaDiamond007]

I think this is going to be a great thread. My husband''s great uncle, Junior, is our "landlord". I put landlord in quotes because we rent our house but Junior has allowed us to treat it as our own - i.e. remodeling, having pets, landscaping - bascially not giving us any rules and restrictions. The deed, however, is not in our names (hopefully someday).

Junior is in his 80''s and lives in the house next door to us. His health is beginning to fail and it''s falling on us to take care of him. He''s been in and out of the hospital a few times in the past year and now has a hospice working coming to his house to check on him a few times a week. It''s so sad. Junior has his mind, which helps but we feel so helpless sometimes.

 

[NewUser]

Date: 6/22/2007 9:30:58 AM
Author:Ellen
I want to hear/think the same thing with my mother. I don''t want to feel as if I''ve failed her, even though I feel she''s failed me. THIS was a real struggle at first. (I''m sure some of you can relate) But interestingly enough, the more I help her, take care of her, the easier it has gotten. What a blessing.

This is similar to my experience in caring for a father who had failed me miserably. I did the right thing for him and after he died, I am at peace with myself.

 

[Regular Guy]

Ellen,

Thanks for writing. These ARE tender years. In my case...potentially made the more challenging by my having postponed being a father. MY father passed last year...and though my mother''s doing pretty well...she''s about 81 and not in great health. Fortunately, she is local to me.

We''ve been a challenge to each other, mother & I. Right now, I''m quite lucky, as I have a very supportive partner, and especially since the birth of my second boy, when my parents, having once retired, then retired again to be near me and my family. Though an only child, I do feel we''ve got it pretty good.

A small plug here, by the way, to this Pricescope environment, that has allowed for such topics, and relationships, to be discussed and nurtured.

Regards,

 

[jcrow]

thank you for starting this thread. altough i''ve never been in this situation directly, it is definitely something i think about. i''m the only grandchild in my family. i have my grandparents, an aunt and uncle and a mother. and my mother and i have definitely had our issues. there have been several times where she''s needed to be taken care of and it''s defintely taxing.

i''ve also seen my 85-year-old grandma take care of her brother who we lost to cancer/alzheimer''s. it was terribly hard to witness what happened when his mind went. lies/blame, the works. heart breaking b/c that''s not how we "knew" him.

i think this is going to be a very helpful thread for many people.

 

[widget]

OMG, Ellen. Your post has stirred up so many memories and old feelings...many mixed...about the last ten years of my parents' lives. Wow.

I know I'll have lots to add...

I suspect most PSers are too young to be dealing with this stage of life...but it is one they all will someday. It's SO HARD...on so many different levels.

For starters...siblings. I only have one, an older brother...and interestingly we were closer during those difficult years than we ever had been before...or since! (Now that our parents are gone, my bro and I hardly ever talk.)

I think what worked for us was clear division of "labor". I spent much more time with my folks...sometimes I stayed with them months at a time...than he did. But he dealt with all the money issues...and it was HUGELY difficult. (My Dad was a VERY VERY difficult man to deal with, when it came to $$$)

I don't think my brother and I had any 'resentment issues' towards each other...but I certainly can imagine how easy it would be to have them! I think I would have gone crazy if I felt he had entirely bailed out and left me to deal alone. In fact I often wondered how "only children" survived these difficult years. I remember thanking God that I had a brother to share the emotional load.

Relationships with our parents at the end of their lives? Whoa...another BIG subject. In summary, I'd say that in my case, I was closer to my mother than i'd ever been when she died. Five years later, I was angrier at my Dad than I'd ever been.

Whew...enough for now.

widget

 

[Libster]

Ellen,
Thank you for starting this thread and I second what Ira said regarding Pricescope allowing us to discuss and nurture such topics.

I read the article you refer to in the May issue of More Magazine and it really got me thinking about what the future holds in regards to taking care of my Parents in the years to come. I''m an only child and I want to provide and help my parents the best I can and look forward to seeing how others have handled situations.

Thanks again for starting this topic.

 

[Sundial]

Thanks Ellen for starting this thread and to those who have already contributed. We lost my Dad to Alzheimer's a couple of years ago and had to put him in a nursing home for the last year of his life. By the time he passed it really was a blessing. I felt like I had already lost him a few years earlier and that he just slipped away from me. My Mom is 83 now and living near my sister. My husband and I help her out financially and try to visit regularly especially when my sister wants to leave town. She has had a hard time being without my Dad. We would all like to see her move to an assisted living facility so she would have more company, but she just isn't ready yet. My father-in-law lives near us and his much younger wife has had him in a nursing home since he developed mobility problems and some dementia after back surgery. It is hard to watch him deteriorate both mentally and physically.

 

[VegasAngel]

My biggest worry is my husbands mother. She made the comment once that when she is old she expects my husband to take care of her. She & I have a terrible relationship. lets put it this way, her mind better stay kicking as long as possible because she IS NOT living with us. My husband & I have actually gotten into fights about it. He can take care of her as much as he wants, it just wont be in our home. A few months back the Today Show had a big discussion about taking care of eldery parents. A lot of it was about the financial aspect but it also brought up the effects it has all around. http://www.msnbc.msn.com/id/11012052/from/ET/

http://www.msnbc.msn.com/id/17134636/

 

[Kaleigh]

Great thread Ellen. I am sorry about your dad, sounds as though you took great care of him. Most of you know I lost my Nanny last year, had taken care of her for the past 16 years, 9 of which she was in a nursing home. My mother isn''t well. But my dad seems to be handling her care well. I just can''t do it, maybe in time I will be ready to take over. But am not there yet....

 

[Ellen]

Thank you all for posting and sharing, it confirms my suspicians this thread was needed! And you are all most welcome.


Diva, you said something that really hit me. That your uncles care was "falling on you". This happens a lot. Every relative knows when one is getting on in years and needing help, but many won''t/don''t do anything if there''s someone nearby...It''s not right, tasks and care should be taken on by everyone, but I think that''s rarely the case.

I wish you luck, and help from here.



NewUser, YES. That is exactly my intention with my mom. I want to do the right thing (which is rarely easier), and be at peace when she''s gone. Good for you!



Ira, I''m glad things are going relatively well for you. I wish you a continuance on that, it IS challenging.

And yes, we are lucky to have this forum, and all of us wonderful people.

jcrow, yes, even though many of you are not yet where I and some others are, it is inevitable that you will be one day. And part of making this process easier is to be PREPARED. Don''t wait until you are actually faced with a major problem to deal with it. I''m having to deal with my brother, who tends to do this. He thinks I should quit "worrying", or "borrowing trouble", in my endeavors to get things lined up for the day my mother literally can''t be alone again. I''m not sure what he would expect me to do if that moment arrives and I haven''t given a thought to it.

But then, he''s not the one down here dealing with her....

I hope you get lots of future help from here!




Widget, hard indeed.

I''m glad to hear your bother helped out, in a large way, for your circumstance. I''d be curious to know if he offered, or you asked him to. The only thing of real importance my brother was doing for my mom was getting her income tax stuff ready. Which is just a pain in the butt, nothing horrendous. But since I took over her checkbook, well, there I am with all the info. It''s SO much easier for me to do it. He didn''t even ask if I would, he just quit.

So that''s what I''m dealing with. Me thinks I''m gonna have to open my mouth and dole out some duties....


I''m sure you have a lot to add too. I look forward to your posts. I too have a lot of info, much too much to post in a day, or two!




Libster, I''m glad you read the article and it got you thinking. It''s a very touching eye opener to be sure. And I could SO relate to her. I think many who have gone through this can.

I hope you also find the help you may need here.



And again, thanks to all of you!

 

[Ellen]

I will respond to the rest of you in a bit. I''ve got something going on here that''s taking my attention, and I want to post when I can devote time to them. Gosh, so much to say!!!


I really think this thread will also be cathartic for many, even if no help is needed.

 

[Lorelei]

Date: 6/22/2007 11:13:25 AM
Author: Ellen
I will respond to the rest of you in a bit. I''ve got something going on here that''s taking my attention, and I want to post when I can devote time to them. Gosh, so much to say!!!


I really think this thread will also be cathartic for many, even if no help is needed.

I appreciate you starting this thread friend! I will chime in soon but suffice to say it is a challenging situation.

 

[Skippy123]

Great thread Ellen. My parents took care of an elderly great aunt and passed she but it was extremely difficult for them and sad for me because she had alzheimer's.
I like this thread. It is a nice way for one of your points to be met (sympathetic ear). My parents are getting older in their 70's and I think about this often. They are fine now but their will come a time that I know I will want to care for them. I am sorry you have to face this Ellen, I too think you are a wonderful daughter. You have such a good heart and I see it in so many of your posts.

 

[DivaDiamond007]

Widget is right in that I think most on this forum are young to be dealing with this topic, however, it is most difficult for my husband and I because we are in our 20''s. I am just getting settled in my career and we''re talking about starting a family.

Ellen, you''re right. Other family members think that it''s "easier" for us since he lives next door. We have lives, too! We love and care for Junior so much but, at this point, he does not need someone 24/7 and if he did, then we probably are not the best people to be put into that position. Luckily, Junior still has his mind and is usually in good spirits.

 

[Rock Candy]

Oh boy, do I ever need this thread! Where to EVEN begin? It will be almost 2 years that my Mom has been in a nursing home. My Dad took care of her 2 years prior to that time, utilizing 24/7 paid help, which is terribly expensive. There were numerous other issues with inside help – NO privacy, stealing, making sure they arrived, finding someone at a moments notice when a caregiver calls in sick, writing checks for each one, keeping track of their hours, making sure they didn’t abuse my Mom, waking up my Dad in the middle of the night to help them pick Mom up when she had fallen, etc. It became sooooo much that my Dad just couldn’t keep her at home anymore. It’s so very sad the day the ambulance arrives to take a love one away. You know in your heart it’s a one way street, yet you try to be so positive. Not easy any way you look at it. Just one of those necessary evils in life, I guess. This happened way too quick – weren’t my parents supposed to live forever?

I live states away from my parents – about an 11-13 hour drive depending on traffic. I spent my 2 weeks vacation at their house (denying myself a real vacation), hours of trying to troubleshoot and listen to my Dad on the phone, searching for nursing home reports on the internet, and feeling guilty ALL of the time for living so far away.

We are a VERY close family – when one hurts, we all hurt. I have 2 siblings, one of which lives close to them.

My Mom can’t talk – so I can’t call her or have a conversation with her. It’s like she’s going through a living death if you can grasp that concept. It’s been about 3-4 years since we’ve been able to have a conversation, yet her mind is still there… about 50-75% of the time.

Here’s a typical visit when I see my Mom. She smiles at me when she sees me. I try to hold back tears when I hug her, but never manage to succeed. I tell her about the family, what we’ve been doing, funny stories about things that have happened, the weather, about what I cook for dinner, the dogs….. anything I can think of. It’s very hard to carry on a one-way conversation. I attempt to make her hair look better and file her nails – she likes that alot. She fades off and sometimes looks away or falls asleep. I stroll her reclining wheelchair to the cafeteria, then place a bib around her neck and try to feed her. She spits out what she doesn’t want or if she’s had enough. We feed her “goodies” from home at the end of her meal, which she enjoys. About 5 minutes before I leave, I let her know I’ll be leaving in a few minutes. I give her a big hug and she barely hugs me back – she’s tired now. It is so hard to switch roles with your parents.

This is so hard to even write – I’ll have to write about my Dad later. Thank you all for listening.

 

[justjulia]

Thanks for this, Ellen.
My mother has lung cancer and congestive heart failure, and schizophrenia. Everything is controlled, and has been for some time. She had a good bout with pneumonia back in January and we moved her in with us, shortly after we downsized into a much smaller home. Her memory has been getting worse, to the point where she is forgetting what day it is, time, etc, which has affected her ability to manage her own 22 medicines. So, I am tethered to the house-afraid to take trips over the time of day/night when I have to be home to administer a medicine. I have a husband and two teens and pets and well, it''s all about personal space. We are looking at assisted living, private, since we found out that nursing homes will not accept her being on a 4 thousand a month new medicine that has stopped the lung cancer in its tracks/ per medicare. My brother lives 10 hrs away and tells me I am better with details so can handle all this.

Now I''m feeling really guilty for wishing she was not on that med. I feel like such a bad person.

I''m an slp in a school, and this has until August first to get sorted out. I can''t stand the thought of a stranger coming in 4 hrs a day, which is what has been suggested to us by our hospice social worker. It just creeps me out. My home is already a revolving door for nurses, aid, O2 provider, and social worker. I''m up at the crack of dawn with meds and cleaning and trying to figure out a way to provide nutritious meals when my teens are happy with pizza or speghetti. It''s like I''m running 2 households. Husband can''t walk around in his underwear, Lifeline is always going off by accident, the O2 machine sounds like an airport terminal in the kitchen, the morphine is on a different schedule than the rest of the meds, towels have to be bleached, house must be presentable at all times in case we have emt or other special visitors.

My mother was in and out of mental hospitals during my growing up and we are not what you would call close. I feel the same as someone earlier said. I''m giving my all for someone who I feel did not do the same for me. Some of it she could not help but some she could.
Oh well. I''m doing what I would want someone to do for me.

 

[rainbowtrout]

I worry about this a lot. I know that might seem odd since I''m 23, but yeah.

My dad married a woman 20 ys younger and she has a son (my stepbrother) so they are taken care of for the most part. I will try to help as much as I can but I know he has people other than me.

My mom and I have been switching roles since I was 9 or 10 and she was diagnosed with a brain tumor. Just recently she had a seizure and stopped breathing and I had to take her to the ER, thank goodness she happened to be with me at the time. She lives alone and has no family at all other than me at all and no savings, medical and living has run it all out and she''ll be out of savings in 10 years or so. I don''t know what to do, and I worry that she''ll have no money and I won''t have enough to take care of her properly. Talking about this with her makes her upset, which I understand, she feels condescended to. We have a good relationship but I worry about having the means to take care of her. She doesn''t see a big need to worry about money or put money away, when I mention that when she is in her 80s she will need care and that''s expensive, she says well I''ll just die or kill myself, if I think I am getting Alzheimer''s I''ll just go on and die..

She isn''t saying it in a make-me-feel guilty way, just sort of nonchalant. I know I can be a worrywart but....meh. My grandparents won''t be able to help, they''ll pass on before she does. At least they have 2 other children who can help take care of them, plus me, and enough money. (mom is not their daughter, I''m sort of an adopted grandchild).


Sorry. I''ve just been fussing about this a lot since her seizure a few days ago. We think it happened because the Moroccan doctor perscribed her a medication that he said wasn''t morphine which was, and then it interacted badly with another medication or she took too much, I don''t know. Meh. Thanks for listening.

 

[velvetfist]

This is difficult... I just keep reminding myself that ''this is all temporary". Everything in life is really...

I''m an only child, and my parents are good for now, but I have many single aunts and this past year has been really tough for them/us. One had a stoke and is still being rehabilitated overseas (luckily, we have family there) but we still had to handle all her paperwork (insurance, leave of absence, etc) as well as her apartment and rent, dog, etc....

My other aunt is manic depressive, and my aunt''s stroke sent her into a tailspin. We, the family, discovered she has a good amount of credit card debt, and that she''s been skipping work, but we''ve been trying to coax her back to functioning. This past tuesday she took 120 Prozacs while she was staying at our house, and let me tell you, it''s not been easy at all. This weekend we will be packing up her apartment to move her in to share an apartment with my stroke aunt. *sigh*. It''s really been putting out one fire after another, and through it all I wonder... what if they didn''t have us family? This is how people end up homeless.

I remember the days when i did other volunteering work, which i''ve given up in the meantime. Charity really does begin at home. I''m thankful to have caring and supportive friends to relax with when i get the time.

 

[Sundial]

Wow this thread really brings home the issues that are arising for all of us with an ageing population and families that are spread out more than ever. No one should feel guilty about wanting to make a difficult situation better and while none of us wants to put someone in a nursing home there often is just no other choice. There are no easy answers and every situation is different, but we can all share the same pain and frustration and sense of loss and know that we are not alone.

 

[Regular Guy]

it''s a small world. Today, there''s related advice on MSN, here.

 

[Ellen]

I realized after posting, I didn''t explain something, so it might have left you wondering. My parents were divorced when I was young. My mom never remarried. My dad did, but his second wife passed away many years ago. That''s why there was no mention of my mom helping to take care of my dad. Sorry for any confusion!





Skippy, thank you.

Hopefully you''ll get some good ideas from here for in the future.



Diva, if I were you, I''d be talking to other family members NOW, to let them know what you will be able to do, and what you won''t. That way they can (hopefully) be preparing for the day he really needs help. Make them realize it can''t, and shouldn''t all fall on you.



RockCandy, your post made me teary eyed when I read the line, "This happened way too quick – weren’t my parents supposed to live forever"?

As kids, I think most of us feel that way, no matter how old we are. I know when my dad got sick, and especially after he was gone, how upside down my world felt. Who was I going to go to with important questions, or problems?? He was so smart, I thought he knew everything.

It''s a terrible shock to our psyche when a parent begins to slip, and then leaves us.

I''m so sorry to hear about your mom, what a sad situation. You sound like you are doing the very best you can, and that''s all you can do. Does the sibling close by help out? And don''t feel guilty for living far away, we can''t all stay close by to take care of our parents in the later years. I think that''s simply unrealistic.

Your last line is very profound too. Yes, it is very hard to switch roles with a parent. And very sad.

Hang in there, and get everyone to help!



Julia, you are so taxed...First off, it may be a given, but do you have a weekly medicine dispenser to keep her daily meds straight? If not, get one, and dole them out on Sunday for the week.

Next, will hospice not cover the expensive medicine? It''s been awhile since I''ve dealt with them, but I "thought" they covered any med the patient couldn''t live without for their condition. Also, is she on a prescription plan that could cover some of the cost??

You need to talk with your brother (as I do mine) and tell him no matter how good you are with details, he can learn, and help.

Really, you need to put your foot down.

Also, can you get a cleaning lady to come in once a week to help?

You are doing a great job Julia, but you definitely need help, or you''ll burn out. {{{hugs}}}



rainbowtrout, I''m not sure what to suggest to get your mom thinking of her future. I guess if it were me, as much as she didn''t want to hear it, I''d lay it on the line, and put forth the very gim reality that could occur if she doesn''t start saving. I know that wouldn''t be easy, but honestly, she is in denial of what is to come. I don''t mean to be mean, but it''s really not fair for her to go on like this....


velvetfist, so sorry to hear about your aunts. And YES, that is how a lot of people end up homeless, no family. So sad. I''m glad you guys are there for them. Dealing with mentally unstable relatives is a real challenge.

I''m glad you have your friends!



Sundial, great post! You pretty much summed it all up in a few short sentences.

Ira, thank you for the link. I''ll read up and then comment. What perfect timing!



For anyone dealing with an Alzheimer''s patient, I would suggest getting the book, The 36 Hour Day, it''s a great help in understanding and dealing with this disease, and other related demmenting illness.

http://www.amazon.com/36-Hour-Day-Alzheimer-Dementing-Illnesses/dp/0446610410

 

[perry]

Ellen, and the others.

I''ve got to keep this short as I''m exhausted and will be back to bed shortly.

It is tough and frustrating in many ways - and rewarding in some ways.

There are 8 of us kids. Only 2 of us are really helping with the care of the parents. I live a 3 hour drive away. Others live a lot closer. I have managed to get some of the others to help financially as we are paying about 1/3 of our parents cost of living.

Several of the Key frustrations I have is that I have some minor medical issues and need time to deal with those as well - that I am ignoring more than I should. I need to be building my own retirement fund -and am instead supporting my folks with most of my "extra" money that I would otherwise put asside. Not to mention the concept that It''d be nice if I had time to meet a nice lady for a serious relationship in my life.

Yet, what do you do... They are my parents....

Perry

 

[velvetfist]

Ellen- thank you. My grandmother has Alzheimer''s. It was harder to deal with before my Grandfather passed away, b/c he really didnt'' understand it and would be extremely short tempered with her, yet we didnt'' want to separate them, b/c he''s the only person she remembered. My Grandmother is staying with family in Asia, where luckily it''s easier and less expensive to have full-time care/domestic services.

My aunt is now in the Psych ward... she''ll take some time to recover. She was telling me about other family that had visited, but some who hadn''t (my older, male cousin, who''s done very very little.) She said that his father said he was "too scared" to visit... and that just BURNED me up. To not offer any active support, and then be unable/unwilling to offer any moral support is totally... its just completely dumbfounding to me. I mean, MAN UP.

 

[suzi]

Wow, what a great thread! This is obviously an issue many of us are already dealing with, and many of the rest will likely deal with in the future. It''s great to have a place to talk about the frustrations without feeling "judged".

Here''s my own situation...I am the oldest of my siblings. My sister, who is two years younger, lives about an hour and a half away, and my brother lives about eight hours away. My sister will occasionally made a quick trip to visit on weekends (when she isn''t "too busy" doing other thing), but she always stays at my house because it''s "more convenient" than going to my mom and dad''s. So she really doesn''t ever get a good picture of what''s really going on with them. My brother usually only makes a visit once a year, and it''s basically the same story...he comes to MY house instead of my mom and dad''s. Mom and dad will come to my house when my brother and sister visit, because it''s the only way they will get to see them. Get the picture?

Now, here''s the story with mom and dad. Mom has MS and a variety of other health problems which seriously limits what she is capable of doing. My dad is a diabetic who had a stroke nearly 6 years ago with left him with some significant impairments. He is also diabetic, and not really very compliant with his diet and medications. So far, neither one of my parents is disabled to the point of being in a wheelchair, but they are really not capable of totally caring for themselves or their home. I do not live in the same town, but I live in a town only 15 minutes away from them. Their doctors and the hospital they use are located in my town, and it''s the usual routine that they come here and stay at my house when they have appointments and I am the one who takes them to and from their appointments, therapy, and treatments. It''s a weekly occurence. I''m also going over to their house often to clean, take care of the yard work, and other errands. Also, due to some poor planning and unwise financial choices, my parents are on an extrememely limited income, and most of their money is spent on paying for the necessities, which includes an ever increasing list of expenses related to their health problems.

I am a nurse, who is currently functioning as a stay at home mom, and most days caretaker of my parents! I have some health problems of my own than I find myself ignoring or putting on the back burner simply because there is no time for ME to make doctor''s appointments between caring for my children and caring for my parents. My husband helps out as much as he can, mostly financially, because his job is one that takes him out of town frequently and he simply isn''t phsyically here to do much more. I have tried asking for help from my sister and brother, without much success. They use the excuses of living too far away, and not having the time or resources to help. I feel that they could help out financially, if nothing else. My parents really need a new home, preferrably closer to me, and I feel that my siblings could pony up some money for that. I know they both have the financial means. My sister''s husband is the vice president of a major international company, and my brother is fairly well off himself. But whenever I raise the issue with either one of them, all I seem to get is a "hard luck story" about how they don''t have the expendable funds! They also use the cop-out that I am a nurse, therefore in a much better position to know how to help my parents with their many ailments than either of them are.

I do feel a certain obligation toward my parents, because they were there for me and my husband and kids many times when we really needed them. My husband is more than happy to help them out, because both of his parents are deceased and he loves my parents as if they are his own. But more than obligation, I WANT to do this for my parents. I don''t want to be left with any regrets, or feelings that I could have done more. I just can''t see how my siblings don''t feel the same! My parents have done just as much for both of them and their families as they''ve done for me and mine.

Sometimes when things really get me down, I wish that I had moved away like my siblings did, so that I could have an excuse for not being the one who gets the responsibility of my parents by default. But then I feel so guilty for even having those thoughts! If I had the money, I''d buy my parents a home closer to mine where it would be somewhat easier for me to help them out, but I don''t have that kind of money, and I don''t see my siblings helping me out in that area at all. For the past several weeks, my dad has been dealing with some diabetic foot ulcers that are not healing, and the situation is getting dire. My dad is looking at possibly have his foot amputated. I don''t know what we will do if that happens. He will be completely disabled at that point, because the foot ulcers are on his "good foot", his other foot has been rendered almost useless from his stroke. My mom would no longer be able to care for him once he''s wheelchair bound. He will either have to go to a nursing home (which will totally drain their finances) and my mother will probably have to move in with us, or else I will have to bring my dad here to live with me and care for him all by myself. Just the thought of all of this overwhelms me to the point of mental exhaustion! I still have my kids to take care of, and because of my own health issues, some days I barely have the energy to do that! I don''t know how I will cope if I have to nurse my father with an amputated foot 24/7.

Whew...I does help just to get some of that off my chest. Whenever I try to vent to my friends, I get little sympathy because most of them haven''t been in this position to know the kind of stress it causes. I am grateful for their sakes, but it sure doesn''t ease my burden at all!

 

[divergrrl]

This thread makes me nervous...

Rock Candy: your post made me cry. I am so sorry your mom''s quality of life has gotten to this. How hard for both of you & I wish you both moments of peace & happiness in all of it.

My MIL gets here on monday. I am coordinating her Oxygen tank & she cannot handle the stairs in my house so we have her sleep in our master suite & we take the guestroom downstairs. Thank God we built a master on the main 3 years ago...because her previous visits she almost killed herself going up and down our stairs to use the restroom at night.

Plus she can no longer climb over a tub side to get in a shower (my guest bath of course) so when we built our master, I put a bathroom on it with a walk in shower & separate tub. So it makes a great suite for her to stay in when she''s here.

I feel so selfish saying it, but I hate giving up my room for the week, even though it is the right thing to do--she''s just so hard to be around, her whole visit is an exercise in patience and respecting your husband''s mother...she got so mad at me when my son was born because I was not up for having her out for the birth because I didn''t want to give up my room/deal with stairs/take care of an elderly parent (who makes you wait on her hand & foot--she won''t even get herself a glass of water) & newborn when I had no idea what to expect. She didn''t speak to me for 6 months. Oy. but I just kept apologizing and explaining & she finally agreed it made sense.

In 2005 she got real sick & was diagnosed with an aneurysm on a main artery passing by her kidneys. My SIL about lost it on my DH because he couldn''t drop everything and fly to AZ (we are in OR) weekly for different medical appts. etc. Then she complained about having to pay mom''s expenses, but wouldnt'' take money from us. DH did fly out twice...once for the surgery & once for something else. Always last minute to the tune of a $1000 for a last minute fare. Since I am a SAHM, I even offered to come out for a month or so, bring my son & drive her to all her appts afterward so my BIL & SIL wouldn''t have to take time off work. My MIL has a nice 2bdrm 2bath condo with plenty of room, so it would have worked great. No one took me up on it.

We get that it is hard for my SIL & BIL to shoulder all the responsibility for MIL. That''s why my husband took a job that includes Phoenix as part of his regular travel...it gets him there more often & he can check up/help out more. But it is not feasible for us to drop everything and hop on a plane at the last minute every time something goes mildly wrong. Yes, DH can be there when things get serious, but for the everyday nuts and bolts, well, its unfortunate we live here, but we will have my parents to contend with someday & I remind my SIL of that. Its not just vacationing in la-la land over here. My mother is blind in one eye & macular degeneration runs in her family--I will have that to contend with. My SIL is 12 years older than me & my MIL is 74, while my parents are 62 and 65, so I remind her that while my DH might not have the burden of their mom, he has to help me with mine. Of course, my parents didn''t smoke for 50 years like she did, and mine exercise & eat right, while my MIL is one of those that discovered her body too late in life & now is obese & in very bad health. So I''m praying that my parents have a little better quality of life than she does, but there are just no guarantees in this life.

Its just scary because I do not know how we all are going to afford care for MIL & my mom. We did have MIL on extended care insurance, but it was 3000k a year & the coverage was suspect at best. My BIL & I looked into it & decided to liquidate mom''s assets & use those to have her live on -- hopefully that will last her until the end...if not, then medicare will kick in once the assets are depleted. All she had was her condo....but she had a ton of equity in it...so we mortgaged it and put the $$ in a moneymarket & set up autopay so her mortgage & condo fees are paid auto each month.

We looked into reverse mortgages, but those are a rip off. The fees are insane. You wind up getting about .50cents on the dollar. My BIL has an MBA so between the two of us, we crunched a bunch of numbers to find what would work best for her. She was sad, wanting to "leave us the condo" so we''d have a little cash when she passed, but all the kids agreed we''d rather receive nothing & have money to care for her now instead of having to deplete our own funds now that could be going towards things like our retirement.

Scary scary stuff...we just want them to be comfortable & happy...no matter what.

 

[Rock Candy]

Date: 6/22/2007 7:22:05 PM
Author: Sundial
Wow this thread really brings home the issues that are arising for all of us with an ageing population and families that are spread out more than ever. No one should feel guilty about wanting to make a difficult situation better and while none of us wants to put someone in a nursing home there often is just no other choice. There are no easy answers and every situation is different, but we can all share the same pain and frustration and sense of loss and know that we are not alone.

Sundial - You have great wisdom in your words - well said!

 

[Rock Candy]

Date: 6/23/2007 7:25:00 AM
Author: Ellen

RockCandy

As kids, I think most of us feel that way, no matter how old we are. I know when my dad got sick, and especially after he was gone, how upside down my world felt. Who was I going to go to with important questions, or problems?? He was so smart, I thought he knew everything.

It''s a terrible shock to our psyche when a parent begins to slip, and then leaves us.

Ellen - Thank you for your compassion! You touched upon something that was there, but I hadn''t thought about. My mom was not just a parent, but a great friend and support system - now that is in the past. So many issues stem from this role change - for one, it really makes me think of my own mortality and how I want to live my life. My siblings, husband and I have talked about this before. There is no guarantee in life - if there is anything at all we want to do, we need to do it NOW and not wait. You just never know!

 

[isaku5]

Rock Candy, you touched a nerve with me when you mentioned that your mom was a great friend and support system and now due to her illness, that has gone.

My mom was just like that for me as well, but as she became more frail her doctor strongly suggested a retirement home. Surprisingly, she took the news rather well and spent a month there on a trial basis. At the end of that month she returned home, realized that she could no longer cope and asked for one of the private rooms she had admired. I phoned her twice a day and visited every second day....but it was never enough and long story short, she turned on me (the only child) and became increasingly verbally abusive over the next ten years. It was a horrible time and since I had no siblings to help, I felt I had no choice , but to keep trying to do the impossible task of trying to please. She died in her sleep at age 93 and I''m sorry to admit that I felt relieved and could not shed a tear. I would never wish a similar experience on anyone. It''s been over seven years since her death and the emotional wounds are still raw.

I will turn 65 on Wednesday, and hope and pray every day that I will not turn into my mother.

 

[justjulia]

Wow, I didn''t realize so many people here had similar things going on.
Yep, we are on a mediplanner. I control it, after several incidents where she was popping open boxes randomly thinking it was such and such date and time. I put an atomic clock with sticky notes taped where she should look for am or pm, date, and time, but it didn''t help. I have noticed that she has more trouble with little memory issues when she is going through an upper respiratory episode, like bronchitis-which we just went through a week ago. Mom used to get in these moods where she would sit down with the planner and move pills around if she felt something wasn''t in the right place (which it was). It drove me to distraction.

My brother went to look at an assisted living place this morning, sans me (I was helping with the porch thing), and liked it. They are quoting a rate that simply is hard for me to believe and I am trying to tell him this. I have an idea of what is "normal," from my research and visits to places, and that includes tack ons like med management, laundry, and initial medical evaluation. I also firmly belive that wherever this is, it should be near me. I just know in my heart I will need to be there frequently to attend to the little things, including staff meetings, or so my friends who have done this with their parents are telling me. The place my brother found is 2 hrs away and I just don''t think that will work. So, I have set up an appointment with another place nearer, to tour tomorrow morning. (Moving her out of our hospice jurisdiction just means finding a new hospice and 5 new specialists and getting to know them--a nightmare.)

I think that really the thing that will happen is that her health will eventually deteriorate until she has to take more morphine to be able to breathe freely, she will become bedridden and then it will be time for the tarceva to stop and then she will be ready for a nursing home.

It''s really expensive, this private assisted living business. She can''t sell her home, because I have a disabled adult brother living there. So, yes, down the road there will be another situation like this... Maybe I''ll have this whole thing down pat by then, eh?

And then there''s the issue of hospice originally saying she had 6 months to live. It is looking like it is going to be quite a while longer. It''s a strange place- not too sick but not too well.
Anyhow, I''m going to take my time and do this looking around the right way. I''ve arranged for the hospice nurse or aid to be here every day for their usual visits. The person I really need to look after is my husband, who really deserves some privacy from all this.