Helping family members get past barriers to taking action posted by Meg @ 04:20 PM January 08, 2009

Meg — Thu, 08 Jan 2009 16:20:48 -0000

Thanks for the message, Rebecca. Yep, I've definitely gone through the cycle of behaviors and responses that you refer to. Your suggestions are good ones. Thanks!

Helping family members get past barriers to taking action posted by Rebecca @ 02:58 PM January 08, 2009

Rebecca — Thu, 08 Jan 2009 14:58:18 -0000

Hi Meg,

Geez, dealing with passivity is such an issue. And in my family it turns into this passive aggressive thing so you regret ever trying to do anything because of the resistance etc. Then I feel like let them stew in their own juices then, and then I start to feel guilty, and then I try to do something. and then be the heavy pushing everyone and making them all feel resentful :>) such an unpleasant cycle. So that is one part of it for me. Maybe you too?

One thing that seems to work, and I know other people have posted the same idea elsewhere here in the conversations, is about bringing in the expert outsider which helps cut through the family dynamics issues. 2 ways to do this occur to me.

Talk to a social worker from your local area agency on aging, and see if they will come in and evaluate the situation.... under the guise of looking at the needs of your mother. They can 'give permission' for your father in law to have a break.

Another related idea is to talk to their doctor, and see if she will help convince fatherinlaw to have an evaluation done at home, and look at services, respite, etc.

What do you think? Hope this helps!

Helping family members get past barriers to taking action posted by Meg @ 01:53 AM January 07, 2009

Meg — Wed, 07 Jan 2009 01:53:25 -0000

My mother-in-law has Alzheimer's disease and is being cared for at home by her 82-year-old husband (my father-in-law). My father-in-law seems occasionally seems dragged down by his obligations and the fact that he can never get away from his wife (i.e., he needs respite). But my husband and his siblings are very passive and don't seem able to take the steps needed to help my father-in-law get help. And my father-in-law also seems to be erecting barriers to seeking help himself. Any thoughts about kick-starting the process? Thanks.

Caring for a spouse posted by Daisy3rc @ 02:44 AM January 06, 2009

Daisy3rc — Tue, 06 Jan 2009 02:44:47 -0000

Wow linicx, I can really sympathise with you. It really proves no matter what is happening there is someone out there that is worse off. You got more than your share to deal with. I truly hope for you there will be a better day someday.....Daisy

Caring for a spouse posted by linicx @ 05:22 PM January 05, 2009

linicx — Mon, 05 Jan 2009 17:22:33 -0000

Hello,

My husband has COPD, IPF, CHF, DVT, Soriasis, Macular Degeneration and he's a bleeder due to the Warfarin. I''m going into the 12th year of home caregiver. Before this I was a long distance caregiver to my parents before they died.. And also to my mother-in-law who lived to her 99th year. I've probably driven 10,000 miles in the last 26 years. I'd like to say I've been there and done that, but I know I haven't seen it all yet. However.as my husband's lungs fail, he is not only frail and unable to do what he did four years ago, the lack of oxygen affects his cognitive functioning. So he appears to be getting Alzheimer when it really isn't. I'm tired and I have my own physical issues to deal with, too.

My escapte is my computer. Martha Stewart doesn't live here. Senior Services helps with housework twice a week. I'm working on getting respitei relief so I can shop withouut worring about coming home to another crisis. I have a pharmacy at home, pulse-ox, flashlights and a doxen tanks of oxygen. I can deal with most crises. What I can't deal with is coming home to a corpse..

We have good days and bad days, but for the most part we accepted the diagnosiis for what it is and the challenges it brings, and deal with it day at a time. The worst thing though is my daughter. She has Lymphoma and is in the end stage. Modern medicine is awesom. I never thought I'd see the day I could buy Opium in a liquid or medical grade Weed in a pill. She has a licence to buy it to smoke too.

I've been fighting HMO doctors, dirty hospitals and ignorant nurses for so long I could write a book on what's wrong with US medical care. t's a billion dollar cash cow that beneifts everyone but the patient.

I'm always around to chat. I don't have a network. .

Anger at our parents --and guilt about feeling it. posted by Anonymous @ 03:32 PM January 05, 2009

Anonymous — Mon, 05 Jan 2009 15:32:42 -0000

Hi, this is Trudy. It has been a while since I was able to get on this sight, what with my father-in-laws death and funeral, then The holidays. We are going thru the same thing with my mother-in-law except she isn't angry, thank goodness, she just can't remember and asks every day where Dad is. When you tell her he passed away she mourns all over again. My neighbor suggested we not tell her anymore but the rest of the family doesn't agree with that. Then I have my Dad to deal with. He is still in his own home, barely. We had tried to take him into our home a year ago and one night we had a disagreement and when we got up the next morning he had moved back to his place which is just across the road. Last evening after being gone Saturday night and Sunday I called him and he acted so weak he could hardly talk. I don't know if he expected me to rush right over or what, but I didn't. He has done this to us for a long time. We had him going to a phsyciatrist and he was on meds and decided he didn't want to take them anymore and took himself off them. My sister-in-law calls him every other day and she called him this morning and he was real angry. We feel he is very depressed and are helpless to do anything for him if he won't cooperate. He won't go to the elderly get togethers from our church, he won't go to church, he expects us to cater to all of his wants when he wants them. I wouldn't be surprised he will take off for town sometime today. Yes, he still drives, which is very scary. I really wanted to respond to a couple people that wrote in. Deb, you are in our thoughts and prayers. The one consolation is that they are together like they were here on earth. My in-laws were together over 67 years and because Mom has dementia she morns new every day. You have your memories of the good times with them to help you get through the days. Like some of the others wrote you can't know till you go through it yourself. Keep all the good advice coming. It is all very helpful. Trudy

Anger at our parents --and guilt about feeling it. posted by cece @ 02:20 PM January 05, 2009

cece — Mon, 05 Jan 2009 14:20:22 -0000

Hi ReeDee,

I"m really glad you found the site. The folks here have been so helpful, if only to help me understand that I'm not alone.

It sure sounds like you've had your hands full for years. What a blessing you have been to your parents, even though your father can't express that right now. You have to know in your heart that you're doing the right thing, even though it's the hard thing sometimes.

With our family, it's been a year of juggling caregivers, taking food to Mom, doing her chores and helping her dress, and maintaining her house so that she can continue to live there. And even though she has wants she wants it's still not enough for her... still the anger comes through. Though I've "thickened my skin" and am able to deflect some of her verbal attacks (which occur nearly every day), it's wearying and I can't always keep up my defenses.

Some days, I cry all the way home from her house. And that's okay too; it's what I need to do to survive because I'm still basically a softy inside and I don't want to change who I fundamentally am. After all, if I wasn't a softy I wouldn't care so much about Mom's welfare. And I think you're probably a softy too, or you wouldn't bother at all with your Dad.

So once in a while I come back to this thread, re-read the entire thing, and it bolsters me for a time. I encourage you to come back and read through it too, whenever you're feeling low. Please remember that you are never totally alone, that those of us who read this thread will be thinking about you and keeping you in our prayers.

Anger at our parents --and guilt about feeling it. posted by ReeDee @ 11:04 AM January 05, 2009

ReeDee — Mon, 05 Jan 2009 11:04:01 -0000

Just found this site tonight... uh, this morning and have read this string from the beginning.

The questions you have answered!! Thank you all for sharing.

I started helping my parents 10 years ago, when Mom began to fail. After she died, five years ago, I continued to help my Dad... cleaned the house, cooked the meals, shopped, took him to his appointments, church & social activities. I was widowed a couple of years ago and made arrangements to retire this past November because I could see that he was approaching the point where he was going to need care 24/7. Before that point, he quit eating, though he continued to take his insulin and we had the paramedics for him twice in three days. He had also fallen several times. I took him to the VA, where he went for all his medical care, explained what was going on and they admitted him for a week as a "Failure to thrive", releasing him to a Life Care Center for rehab hoping that he would be able to regain his strength. Before he was released from rehab, we realized that he was going to require extensive care, and after an incedent at the house, concluded that he was not going to let me care for him. My brothers and sisters came down and we found a long term care facility for him to transfer to when he was released from rehab. I see him almost every day, and still do his laundry, but he is very angry with me. I know he thinks it's my fault he was not allowed to go home. He still expects me to shop for him, take him where he needs to go and take care of his clothes but doesn't seem to think that he needs to be civil or even talk to me. It's becoming harder and harder to go visit him. I try and take one of my daughters or grandchildren when I go, so at least he doesn't just turn his face away and close his eyes but I am feeling resentful that he expects me to take care of things but doesn't feel the need to show even common courtesy to me, especally if there is someone else with me. I'd just about decided to let the facility do his laundry and just make the effort to visit him once a week to make sure he is getting proper care. Now I understand that he is suffering from all the losses he has experienced in the past few years and has now even lost his freedom. I'm a safe person to take it out on because he is secure in my love... and that's okay.

Thank you again for all of your insight

Dealing with Father with Parkinson's posted by Rebecca @ 04:37 PM December 26, 2008

Rebecca — Fri, 26 Dec 2008 16:37:00 -0000

My best friend's mom and dad are in a similar situation. Her mom is angry at her dad, etc. Their solution was to have the mom sleep in another room, and then bring in an aid at night for 1 shift 2x a week during the workweek. Just so the mom could sleep. Then on weekends, 3 other siblings come in on alternating weekends for a day to give a little break. This is working really well. Can your brother take a weekend night? Good luck!

Poll: Do your siblings/family help enough? posted by Missy @ 04:37 PM December 24, 2008

Missy — Wed, 24 Dec 2008 16:37:08 -0000

Vent away at any time, GaGal! *hugs* We're here for you. I'm so sorry you feel pretty stranded by your family. Think there is any chance, if you ask directly, that they'll help out more? And if you've already tried that approach, maybe ask them for money to hire someone. Wonder if that would motivate them to spend a little more time.

Poll: Do your siblings/family help enough? posted by GaGal @ 02:48 AM December 24, 2008

GaGal — Wed, 24 Dec 2008 02:48:25 -0000

Is it too late to vent?? I see the last post was 1 month ago but I just gotta let it all out! Daddy died 2 1/2 yrs ago and Mom stroked out and I found out she was real sick and didnt even know it. She's had 2 strokes-now paralyzed on 1 side and is wheel chair bound, ended up with 5 stints in her heart, 1 to her kidney, has ended up having both carotoid artery surgeries done, diabetic and has hypothyroidism. Whew! She ended up in a nursing home from Aug 06-Oct 06 but c-diff almost did her in. I brought her home from the hospital on Oct 23, 2006 and she's lived with me ever since.

So, I work full time during the day and take care of her all other times. I have 3 brothers and 2 sisters. One sister takes care of her while I work and gets paid from moms social security. The other sister, hardly ever see her. Only 1 of my brothers helps, every couple of months he takes mom to his house for the weekend. I'm pretty much stuck. I love my mother dearly and will not send her back to a nursing home-they are terrible places. All I ask if for regular breaks from my family which I do not get. Mom has me up atleast 1-2 on average every night to use the bathroom. I am so sleep deprived that i've gained weight-from being dependent on caffeine sodas. My fiance left me almost exactly 1 year ago. I've pretty much given up everything and I'm feeling lonely, depressed and resentful.

Pray for me folks. This holiday season seems to be so much harder than last year.

sibling rivalry posted by Missy @ 09:06 PM December 23, 2008

Missy — Tue, 23 Dec 2008 21:06:13 -0000

Sibling rivalry is, basically, just a conflict between siblings. One may think the other gets more attention from the parents. Another may feel entitled to do less caregiving because of one reason or another. When I think about it, I mainly just think of any point of contention between siblings. My brothers definitely have it, probably because they are so close in age and often compete. Hope that helps!

sibling rivalry posted by patt @ 04:52 PM December 23, 2008

patt — Tue, 23 Dec 2008 16:52:54 -0000

help\

sibling rivalry posted by Anonymous @ 04:49 PM December 23, 2008

Anonymous — Tue, 23 Dec 2008 16:49:40 -0000

what is sibiling rivalry?

were both too young- father depressed & mentally challenged and daughter financially at risk posted by Missy @ 02:16 PM December 23, 2008

Missy — Tue, 23 Dec 2008 14:16:58 -0000

Oh gosh. My heart really goes out to you and your dad.

The first thing that came to my mind is Social Security Disability. He's not too young for that. If your dad is disabled, that program will provide him with income. After a certain length of time (I believe it is still 24 consecutive months) of being on Social Security Disability, he will qualify for Medicare. However, in the meantime, if he's got no/little income or assets, he may qualify for Medicaid. That will give him medical coverage so that he can get the attention he needs. And it sounds like he is in real need.

I would first go to your local Social Security office to see what steps you have to go through to get your dad officially classified as disabled. Then I would contact your local Department of Social Services to see if he will qualify for Medicaid and more assistance, like food stamps, maybe housing and energy assistance, just to name a few.

*hugs* to you. It sounds like you have your hands full. I'm really hopeful there are programs out there than can help you both. Keep us updated.

were both too young- father depressed & mentally challenged and daughter financially at risk posted by Anonymous @ 04:20 AM December 23, 2008

Anonymous — Tue, 23 Dec 2008 04:20:10 -0000

My father is only 60 but he is severly depressed and I believe has some mental problems (though I don't exactly know what). He is incapable of working as it takes everything just to get though a day. His house is chaos. There are piles and piles of stuff everywhere. Its very clean because he is a clean freak but you'd never know becuase of the piles of stuff. He just moves stuff from one place to anohter constantly and takes things apart and never puts them back together. He's very smart and therefore very frusterated about his life. He loses everything from his keys to train of thought. He is overwhelmed by his bills even though I pay for them.

I am 40 and I have financially supported my father for 10 years but not 100% until about 3 years ago. I am recently divorced and can not afford to continue this yet he has no other source of income. He lives in a rental house that I bought for him to live in and pay the mortgage & all bills, buy his food, medical, credit card bills etc. On top of it all, my father feels terrible about putting me in a financial jam. The guilt adds to his depression. The house he lives in is about to foreclose and he'll have to live with me - which is very costly to both of our mental health and our relationship. My father is very depressed about losing "his house" and every time we try to talk about it or about credit card debt (my card, his charges) he feels worse, I feel guilty, he feels guilty and it just makes it worse.

On top of everything else, he doesnt have health insurance. He's too young for medicare or social security. He refuses to go to the doctor, even when something is wrong because he can not afford it and doesnt want me to have to pay more. I'm afraid something is going to happen and then we're all in trouble- health wise and financial.

I've searched online for any kind of support or financial programs and I cant find anything that is close to my situation. Does anyone know where I should start?

Dealing with Father with Parkinson's posted by TheGrandChick @ 07:31 PM December 22, 2008

TheGrandChick — Mon, 22 Dec 2008 19:31:30 -0000

I'm with you on why a live-in aide won't work. We had a heck of a time trying to explain to the agency we were using to get an aide for my grandma why having someone live-in wouldn't help: because my grandma doesn't just need someone there in case she falls at night, she needs someone there to tell her it IS night, 'cause otherwise she's up getting dressed at eating breakfast--and calling friends, doctors, etc--at four o'clock in the morning! So, yeah, I totally understand why having someone who's going to be asleep at night isn't really a viable option.

As for cost...man, I'm sorry. Honestly, I don't even know how much it would cost (my grandma had long-term care insurance, but I bet someone else here could help you with that!), but I can tell you this, though I wish I didn't have to: as expensive as live-in care is, it's unfortunately much worse to do 24-hour, non-live-in (for example, two 12-hour shifts). Have you considered maybe trying to afford someone for just a few hours at night, to give your mom a break? Maybe find someone who could do a midnight-to-6am shift, or something like that? That would theoretically cover at least most of the night (which sounds like your dad's worst time), and give your mom six full hours of rest, if not real, dead-to-the-world sleep. Not enough, I understand, but it would be something.

In any case, good luck to you and your mom. I hope things get at least a little easier for both of you soon.

Problem with sister posted by Ringwood @ 10:56 PM December 21, 2008

Ringwood — Sun, 21 Dec 2008 22:56:07 -0000

Hi All,

My wife and I are caring for my 93yo mother. I am 53 and my wife 43. We bought a house next door to her 20 years ago after her health began to deteriorate. She is physically in tough shape, barely able to walk. She is mentally sharp but short term memory is limited making it hard to self medicate. We have to be there at least twice a day to administer her meds along with Breakfast and supper. She has a local meals program deliver her with a lunch. My wife and I also do all the banking, bills and other misc. support.

I have two older sisters that live about one hour away. One had moved 30+ years ago and the other just a year ago. Neither one offers any support and has made it clear that their roll is just to visit Mom.

The one sister that I am really having difficulty with is the one who moved just a year ago. She actually still works close by to Mom being unable to find a job in her new location. She will stay with Mom once or twice a week to save herself a commute.

When ever I express any frustration about having to shoulder the work, she lashes out that she had taken care of my parents 41 years ago when my mother was in a car accident and my father was sick for years. She goes into long rants about every detail that she was responsible for back then. I was 12yo and not able to really and give the kind if support she did. As I got older I increased my roll in family support as much as anyone. But to this day, even though my wife and I have been primary caretaker for Mom, my sister still uses the events of 40 years ago to excuse her lack of support for Mom now.

I can’t figure out how she can use that as justification for not giving any support now. She'll go on to say "Now it’s your turn"

She actually acts very bitterly toward me and my wife.

I'm at my wits end. Thanks for letting me rant

Sid

Dealing with Father with Parkinson's posted by Anonymous @ 10:10 PM December 20, 2008

Anonymous — Sat, 20 Dec 2008 22:10:37 -0000

Hi Everyone,

Thank you for your lovely support!

The reason why they don't get any help is because of cost. Does anyone know about the average cost of hiring someone? Also, since most of his problems occur at night while he sleeps, I don't think either one of them are that comfortable about hiring someone as a live-in. *sigh*

My mom sent me a txt message saying they are alright and for me not to worry....and that she was just tired and said a few things that was bothering her. How can I not :( I notice her ageing, tired, not eating well...I've even recommended her to go see a naturapath.

We used to Skype...I need to organize a regular time with them to chat.

Thanks everyone!!

Dealing with Father with Parkinson's posted by Rebecca @ 05:26 PM December 20, 2008

Rebecca — Sat, 20 Dec 2008 17:26:03 -0000

Hi Anonymous,

I agree with Laura about getting your mother some help. Also, if they are able to use the internet, you could use "Skype" to make cheap video calls to the them and just check in and have them check in with you regularly. Sometimes just being able to see their faces, helps ease some of the anxiety. Good luck!

Dealing with Father with Parkinson's posted by LauraL @ 04:09 AM December 17, 2008

LauraL — Wed, 17 Dec 2008 04:09:45 -0000

I think your mother needs some assistance. An aide, perhaps live-in, who can help with the physical work so she can rest, too. You might check our Local area of the site, and/or check with their state's agency on aging for resources for assistance, as well. Let us know how things are going!

Dealing with Father with Parkinson's posted by Judithmft @ 07:07 PM December 16, 2008

Judithmft — Tue, 16 Dec 2008 19:07:37 -0000

Worrying about this stuff long distance is so hard! My heart goes out to you.

I am only just learning about Parkinson's recently, but I wonder if some of the emotional volatility and your dad's behavior is due to the disease or the meds? He may not be capable of healthier communication. On the other hand, do their interactions seem different than before the Parkinson's or is it just more of the same? Pre-existing dysfunction is sometimes exaggerated by illness.

I also wonder if you can communicate your worries to your mom's and dad's doctors so that the next time they go in for appointments, the doctors can keep an eye out for the problems you are describing and give both your parents some recommendations.

Dealing with Father with Parkinson's posted by Anonymous @ 06:18 PM December 16, 2008

Anonymous — Tue, 16 Dec 2008 18:18:05 -0000

My father has been living with Parkinson's since 1998. He is only 62 years old. It has been very difficult for him and also our family. From his medications, we noticed a behavioural change in him. He is now retired but my mother is still working full-time. However, his need for her constant care during the night and some times during the day is taking a toll with her emotional and physical health. They argue constantly.

My father has been stubborn and will not be happy unless he gets whatever he wants, no matter how ridiculous it is. From the medication, he will say inappropriate things and some times even lie to us. My mother has become tired from lack of sleep (helping him flip when he is frozened, using the toilet, etc) and she is becoming paranoid with his behaviours. She is constantly worrying about where he is, if he is stuck somewhere because his medication wasn't working, etc. He also often times verbally manipulate and abuse her. He often times would say he wants to die...either out of depression or to upset my mother. She of course nags and gets frustrated/upset with him.

Unfortunately to make things worse, I am now living in another country and my brother is finishing up his medical fellowship in Los Angeles. We are pretty worried that our mother's health will decline.

I guess I don't really have a question. I just don't know what to do. I've tried talking to them, and have them communicate honestly in a non-volatile fashion. I've tried to convince them to go see a therapist or join a support group. They just won't do it! All they seem to want to do is argue.

I feel defeated and tired. I know they love each other but none of us knows what to do now.

maintain marriage with multiple health issues posted by LauraL @ 07:16 PM December 12, 2008

LauraL — Fri, 12 Dec 2008 19:16:23 -0000

Hi,

Do you have a pastor who could make a difference? Maybe her doctor or some other very trusted friend or individual that she may listen to more closely than she would her spouse? (I know my kids will listen to another adult like they are the sage on the mountaintop than listen to me say the exact same thing!)

Perhaps find something you can both enjoy together. Going for a walk? Playing a game? Doing the little special things like leaving a message in a lunch or on a mirror? Little buttons that help close up the coat of your marriage around you both.

Let us know how things are going.

maintain marriage with multiple health issues posted by Missy @ 06:54 PM December 12, 2008

Missy — Fri, 12 Dec 2008 18:54:54 -0000