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Old 04-18-2012, 07:43 AM   #1
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Wrestling with GUILT!

Hi All

Sorry to say I have not been to this board in quite some time, but realized that I really need to vent to people who truly understand, and this is the best place!

My MIL and FIL live in an in-law apartment with my husband and I. My FIL has Alzheimers, and MIL has so much anger and resentment towards him (and has for most of their 60 year marriage). She wants nothing to do with taking care of him - so you guessed it....much of it falls on me and hubby. They have 7 kids...6 of which have spouses, and 5 of which have (adult) children. So the family is very large. Most of them have jobs and their own lives that keep them busy and give them an excuse to not be around as much as they "want" to be. I do not work, as I am disabled, but want to try and get back into the working world. My husband does work - owns his own business. So, you see I am home most of the time, I take them both to all of their doctor appts, grocery shopping, hairdressers, etc.

They are both so negative and depressing about everything, argue a lot and they are dragging me down with them. I get to hear it from both sides, as well as from other family members. FIL was recently hospitalized for 2 weeks for some bladder and prostate issues. After which he was very weak, so we requested a rehab facility, because we knew that MIL would not be able to, nor desire to, take care of him as needed. She said herself that she did not want to have to cook all of his meals and remind him to take his meds, shower, change clothes, etc. Much of the family was against the rehab facility because of it being in a nursing home setting, and their fear that he would never leave there. After a week, he gained back his strength and rehab gave him the ok to be released. NH suggested he is not yet ready for long term care. He is still able to do many things, and he put on quite the act for them - so that he could "get out of there". MIL in the mean time got used to being alone and actually started enjoying life (a little). Now he is back home - to the great happiness of most of his other children and himself. Now they no longer feel that they need to visit daily as they were doing in the NH. What they dont understand is that now my MIL is miserable again - they are constantly arguing, and making things very tough on my hubby and I.

Heres where the guilt comes in - I dont want to do this anymore...and neither does my husband. Are we horrible to wish for him to not be here, so that we can enjoy our lives again? Why do the others get to resume their normal lives while we get to deal with the crap? I will not move, simply because my MIL loves it here with us, and I dont want to take that away from her. I have tried to get more help from family and it may last a week or so, before suddenly they are back to their lives, and occasionally checking in with me for updates. I want to take some online courses and get back to work by fall - but feel guilty because I wont be here to take care of them as much as I am now. In the same breath - I want my own life too!

Thank you for anyone who has continued to read this far! Im sure there are no perfect answers, but I welcome any suggestions!

Christine

 
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Old 04-18-2012, 07:58 AM   #2
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Re: Wrestling with GUILT!

Christine,

I feel for you! I understand your position. Is there any way you can communicate with other kids about Mom's unhappiness? Does she tell them that she hates to help Dad? Do they know at all? Do they care about Mom?
This is one thing you can try - tell them Mom hates to serve Dad. Mom is miserable.
Maybe they assume you help Dad so Mom is fine but tell them the truth and see.

Since he is not ready for NH, how about assisted living and that kind of setting? Mom cannot do it and you are tied up with your own problems. I understand that. I am the DIL too and my FIL is now in a NH for memory impaired. But he is in severe stage of Alzheimer's so he is very disabled.
(He cannot talk or walk for real, but he likes his peers in the NH.)

What about your hubby? What does he think? Does he understand your pain? Maybe he is guilty about his parents. But Mom is not happy and the adult kids should know that.
You can try to hire a part-time in-home caregiver for Dad.

Keep venting and we are here to help!

Hugs,
Nina

Last edited by ninamarc; 04-18-2012 at 08:09 AM.

 
Old 04-18-2012, 08:04 AM   #3
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Re: Wrestling with GUILT!

Thanks Nina, for taking the time to respond, and for understanding. Yes, the other kids all know exactly how she feels, and some of them resent her for it. They even know that the stress is too much for her and she already has heart condition. Her doctor has even said that she should not be adding any extra stress. But some of them feel that she is over-reacting. Then she feels guilty and doesnt want anyone mad at her, so lets him come home, and lives miserably. This is how they have lived for so long, that most dont see it as a real problem. MIL keeps saying that he is going to put her in her grave, but even that doesnt phase them. Im afraid shes right, and they will see it - when its too late.

Christine

 
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Old 04-18-2012, 08:14 AM   #4
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Re: Wrestling with GUILT!

How sad! They probably don't know that sometimes for the wife who loves to do it, it is always a burden as well, not to mention she hates it. They need to know more about dementia. However, early-moderate stages are tricky. My FIL had stayed home for 6 years in his own old house which we just sold in March. We hired personal caregiver for him since we don't live in the same country (my hubby got a job out of USA and we are in Canada.) It started from part-time, full-time to 24/7. Finally it is too expensive and he got sicker anyway. So we moved him to a home in another state near Canada. He likes it there.
I understand why family wants Dad home. We did that too. My hubby didn't want his Dad to be in a NH yet in 2004. Well he got sicker over the years so we moved him in 2010.
Home care does have the merits because he still has a wife and he is at home and is familiar with it all. One day, he will get sicker, and then a NH will be needed.
For now, please do consider hiring a part-time caregiver. I know Dad may not agree to pay for it but have the professionals talk to him. My FIL was stingy too but the home care boss was able to be nice to him and convinced him. He is still very fond of the home care nurse although we left the service in 2010.

Keep trying - there may be other options.

Nina

 
Old 04-18-2012, 08:49 AM   #5
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Re: Wrestling with GUILT!

They can not afford nor do either of them want homecare. None of the family is really in any position to pay for it either. They have had home nurses from time to time, but insurance only covers it when its medically necessary. And my FIL HATED it, and did nothing but complain about people coming into his house, and took it out on MIL. The NH home said that he is not "ready" yet for nursing home care, after they did a 3 minute assesment of him. He was able to tell them the day and date, only after looking at the newspaper and finding it. Normally he does not know that information. He does not even remember the names of all 7 children, nor how many children he even has. About 2 years ago he only scored 16 out of 30 on the mini mental exam that his doctor had given him. He does very well at compensating and fools many people. He somehow knows exactly how to get around certain questions. I watched last week as doctors questioned him on his family and he could only come up with the names of 3 of his 7 kids. He knew one was my husband and lived upstairs from him, and even after looking at a picture of him...could not come up with his name. His short term memory is really bad....but he is still pretty functional. He has delusions and hallucinations, which are kept under some control with meds.
Assisted living - Im not real sure about. I am afraid of him wandering..he only wants to be with his wife, and there is no way she would move with him. I really know deep down that nothing will be done to change anything until one of them dies. Such a sad realization...thus the guilt. I love them both dearly - they have been my family for the past 23 years. My own mom passed away 17 years ago, and I dont have a relationship with my dad at all. I just dont understand how the family wants to keep him home and happy at the expense of their mothers health and happiness...maybe its just me thats wrong...who knows anymore!

 
Old 04-18-2012, 09:30 AM   #6
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Re: Wrestling with GUILT!

I get it Chris... having been there done that one. The only difference is that we discovered that not only did Dad have Vascular Dementia but Mom had developed Alzheimer's. They wanted to be together. They wanted to be at home. They didn't want anybody there... including us girls except for the occasional weekend visit. They were constantly fussing at each other and Mom in particular was miserable. She had cared for Dad for years with his Vascular Dementia and she didn't want to do it any more. We tried to make it work. We finally insisted on in home care "for Dad" because Mom knew she was ok. Then she ran off the lady that cared for them so well because she hated it. She was miserable, depressed, angry....She had Alzheimer's. We missed it for a long time because Dad didn't know what happened so whatever she said had to be believed. It seemed like an endless spiral downward of Mom being miserable and Dad upset because Mom was miserable... with us having no clue what to do. Some of the siblings thought they needed to stay at home together. It took a while but I realized it was NOT going to work... and yes I got tired of going home every week to fix some disaster.

Did you present the information from the doctor to the care facility assesses? Here it is not up to the facility personnel but up to the doctor to asses the patient and recommend the needed level of care. Will his doctor recommend care?... what level? With a 16 out of 30 on the MMSE he definitely doesn't need to be in a situation that he is not cared for. Here there are facilities, even on the AL level, that are prepared to deal with wandering. They have an alarm system that alerts when the patient goes near an outside door. Otherwise they have the "run of the facility". There are also locked units that are not nursing homes which have coded entrances so the residents can not get out but staff and visitors can. They have to code in a number that changes frequently and those with dementia can not keep up with the code There are also smaller family care home that accept patients with dementia. There is more than one option. Call our local Alzheimer's Association for guidance on what is available in your area. They can also be helpful in dealing with siblings and spouses.

As for the guilt... why! You and hubby have taken care of Mom and Dad until now. The rest have gone off about their lives and left it with you. They don't want a change. Why would they? You are doing it and it is costing them nothing!!! You deal with it all and then feel guilty because you are exhausted? WOW! Guilt is reserved for something that you have done wrong... I see nothing wrong with what you have done.

Then there is the difference between "Wants" and "Needs". Dad wants to be with Mom. Dad doesn't want an in home care giver. The family doesn't want Dad in a facility. Mom doesn't want to be bothered. They all want you to take care of everything and let them have what they want. What I have discovered is that "Wants" are different from "Needs". All that you are focused on is what everybody else wants... what you need to focus on is what is needed. Dad needs more care than Mom is willing to give. Mom needs a respite from a bad situation. You and your husband need a respite from a bad situation. Remember that it is not "All about Dad!" It's about the entire family including you and your husband and Mom! Instead of feeling guilty, you need to put your foot down and just say you and hubby will not be doing it all any more. End of story... no guilt!!

As long as you continue doing what you are doing nobody is going to change anything because they all have what they want.... not being involved in the day to day of the situation. Who has the power of attorney for Dad? Whoever that is has the legal power to move Dad without the rest of the family agreement. It's a tough decision but sometimes it has to be done that way. Mom would be his responsible party if there is no power of attorney so she could sign the admission papers.

It's not about money... that is many times an excuse for not doing anything. If necessary Medicare or VA benefits (if he is a Veteran) can be used to pay for his care. Yes, there is a spend down of 50% of the money that is available. If Mom and Dad own the house and Mom lives there then she can keep the house. But you have to apply for these benefits.

My suggestion is to talk to Dad's doctor. Have a current medical assessment done including a new MMSE. Have a follow up with a geriatric neurologist as well. Explain that Mom is incapable and taking care of Dad and they you and hubby are exhausted and can no longer take care of him. Get the doctor's to recommend placement. Then research all facility types available and which ones accept Medicaid. Find out the cost and how long Dad's 50% of the money available will last (excluding the house). Then apply for Medicaid when needed.

But the first step is to stop feeling guilty because the situation needs to change

Love, deb

 
Old 04-18-2012, 05:32 PM   #7
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Re: Wrestling with GUILT!

Hi Chris! You have gotten some great advice on here. It is only worth what you paid for it but in my opinion, it is worth some serious gold. I am currently working up the nerve to tell my dad that he will be moving from his childhood home to my home in July. He is 82. I am 36. My siblings are (FINALLY!) with me on this but no one is willing to breach the subject. I struggle with guilt and my stomach knots up just thinking about telling my dad what he will be doing, regardless of his arguments or feelings. The women that have responded to your posts have brought me a long way with all of my insecurities and doubts. I think you are marvelous for realizing the situation for what it is. You are compassionate about everyone's feelings. Now it is time to be compassionate about your feelings. I have a tendency to worry about everyone else to the detriment of myself. After a while it sparks anger in me. So before you get to the anger stage, I have only one thing to ask of you...care as much about yourself as you do everyone else. If I could hug you, I would. I wish I had some wise words to pass along but I do not. One day, you and I will be the Deb and Nina of this board.
Love, Lee
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Old 04-19-2012, 09:13 AM   #8
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Re: Wrestling with GUILT!

I truly appreciate everyones advice and suggestions - is it weird that I sit and cry just knowing that someone (that I dont even KNOW personally) has so much more understanding than the people who are a part of my everyday life? I actually feel all of your compassion and caring, just from reading your replies!

Now I will try and expand on some of your questions, thoughts, ideas...

First of all, I have lost the closeness that was always there with most of my brother and sister - inlaws. Its like they know that I have researched this disease more than any one of them have even thought of. And they are more of the - if i ignore it, it isnt happening - type. I have tried so hard to do whats right for MIL and FIL, but my opinions are just not the same as theirs. My husband agrees with me, and has finally started speaking his mind with his family. But all that has done is drive bigger wedges. The decisions are ultimately up to my MIL, as there is no power of attorney currently. She does not want him with her but she does not want him in a NH home either. One reason is because she knows that 4 0f her 7 kids are totally against it, and she doesnt want them mad at her. She also does not want to have to visit him. So, a couple of weeks when she finally spoke her mind and said he could not come home yet - family members started fighting and blaming my one sis-in-law and myself for talking MIL into that decision. That got her very upset, and while she had the best 3 weeks that shes seen in decades, she agreed to take him back home. So now, the rest of the family can go about their happy lives - dont visit nearly as often, dont even call regularly...so its all back to normal for them. Theyre loving life! Its easier for THEM if hes home, and my MIL wants to burden as few people as possible with all of this.

As far as our living situation, my SIL actually got the mortgage on the house we are currently living in, after the house that hubby, myself and kids lived in and another property we owned (where his parents lived) were foreclosed on 4 years ago. I became sick and could no longer work, and the 3 years that it took for me to collect Soc Sec disability, caused us to lose everything. Anyhow, my SIL offered to acquire the mortgage and we would make the payments on a new house. It was MY idea to find one with an inlaw apt so that we could help take care of them. The first year was fine, until things started getting worse with FIL. So, MIL and FIL have never owned property or had any assets of any kind. They do pay a portion of the mortgage payment with us. I have applied for medicaid for FIL - its in the process now. I am sure he will get it, but its really not going to matter, because my MIL will keep him home and live miserably, against even her own doctors advice, just to keep certain family members from being mad at her.

MIL gets mad if anyone gives FIL too much attention, beccause hes "a jerk and doesnt deserve it". So theres always a delicate line to walk with the two of them!

The guilt I feel is for a few reasons. I feel like I am the bad one for wanting him to not live here anymore. That I was enjoying those three weeks that he was gone. And that Im anxious for the days when hubby and I can live OUR lives again - like the rest of them do...all this while it was MY decision for these living arrangements in the first place. Both of our kids have just recently moved out on their own and its like Im dealing with two 5 year olds that live downstairs now!

Ok, Ive gone on long enough, but man it sure feels good to get all that out!! THANK YOU all from the bottom of my broken heart - you have helped more than you will ever know!

Christine

 
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Old 04-19-2012, 10:29 AM   #9
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Re: Wrestling with GUILT!

Chris,

I understand your feeling that you don't want FIL and etc. You feel guilty and etc.
Well me too. As you may have seen my new post about the other residents. The guy greatly insulted me and my hubby and yet he was just demented.
It is not his fault but it was our disturbing him. But he disturbed my FIL and told him my husband was not the son and etc.
Well I know we are the ones that can make changes and the guy cannot.
I could only complain but it is us that have to back down.
So today I am thinking, why am I taking all these bad stuff for my FIL? He is not my Dad! I didn't get to spend time with my own parents. I got to be blamed, discriminated and ridiculed by my FIL's neighbors, his mates in the NH and for selling his house and etc. Why am I doing this? I am a sensitive person who hates to be hurt in public or even in private. I am hurt by this guy.
It is all due to my FIL. I am not going to see him again if I can help it...

On and on I go like that. It is so emotional. It is not your guilt. It is nothing wrong to feel this way. Why should I be abused emotionally? I am not going to eat meals there in the NH again... Should I divorce???

Maybe I will get better in May to feel like going again. It is normal to feel upset. Go do something else for yourself and ignore what is going on for a while. Think about your own health. Go jogging or exercising.
Trust me, it will be over. I am doing this for my marriage.

Hugs,
Nina

 
Old 04-19-2012, 08:51 PM   #10
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Re: Wrestling with GUILT!

Christine, yes it does help to say what you think and find clarity. It does help to get it out in the open if for nothing else for you to put order to your thoughts. I still say you are letting a few that do nothing hold the rest of you hostage to what they want. Mom has the power and doesn't want him there. You and hubby are the ones that are doing all the care giving and you don't want him there. Those that are running the show are not even there. WHY?? Oh yeah I would be talking to MIL. I would be telling her that it was her choice what happened to FIL. If the other siblings are not happy so be it. Tell them you and hubby are going on an extended vacation and they can set up a schedule to come come spend the days with MIL and FIL. Or you would go one step further. My Mom actually did this to her sister who was trying to call the shots but not take care of Nannie. Mom packed Nannie's suitcase, took her to my aunts house, and LEFT HER!! 12 hours later my aunt was at our door step completely emotionally distraught because she couldn't do anything with Nannie. Mom only took Nannie back after some serious discussion about shared responsibility and not being the absent know it all. From then on my Aunt had Nannie every other weekend. So if the other siblings don't want Dad in a nursing home.. perhaps they can take a weekend each in rotation and then both hubby, you, and MIL can have a couple days off a week They would only get FIL about once every 6 weeks... and those of you that keep him all week would have a chance go get some life back.

Nina, why are you blaming your FIL for the actions of another resident? If you understand that it was demented behavior by a resident who had dementia and that he can not change how he reacts to his routine being disturbed... then why is it such a personal attack on you? And they you speak of divorce? Please try to understand that it is not your husband's fault that his father has dementia and is in a care facility where other dementia patients live. It is not your FIL's fault that his buddy was upset that you were sitting at his table. It's nobody's fault. It is just something you have to expect when you are dealing with dementia. If a new born spits up on your new shirt is that the fault of the mother? It is just something that happens when you hold a new born Your FIL's friend emotionally spit up on you just because you were there. It is what happens. I am sure nobody else gave it a second thought except for you. The residents don't remember it and the staff is used to it. It was only you that hold on to the moment. I let that stuff go without a second thought.

Love, deb

 
Old 04-20-2012, 06:35 AM   #11
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Re: Wrestling with GUILT!

Deb, I am not blaming my FIL or anyone. It is the stress. We got problems in our family so it naturally comes out with the stress.
Note that I am not blaming anyone. Do you understand stress? I got problems so I sometimes cannot take it. I know that. Lots of families have stress about having someone with dementia.
I don't like the situation although it is almost over after 10 years now. We need to hang on for another 2 years or so.
I did everything my husband should have done. He is the one that is cold and I am the one that spent more time worrying about his Dad. He is passive and I actively seek for his dad's help. So I will need to cool down and let hubby handle it. It is his Dad and I am not supposed to be too eager as some people think I am just the in-law and what right do I have to mind the business. Yes, we do have problems in my marriage. This is the trigger. Imagine I am always blamed a lot by doing things for my FIL. People discriminated against me and I was just doing things for my hubby.

Nina

Last edited by ninamarc; 04-20-2012 at 06:38 AM.

 
Old 04-20-2012, 08:17 AM   #12
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Re: Wrestling with GUILT!

Yes, I understand stress. I always liked this definition of stress.... Stress is a feeling that's created when we react to particular events. It's the body's way of rising to a challenge and preparing to meet a difficult situation with focus, strength, stamina, and heightened alertness. Stress is not always negative. Stress does trigger the hypothalamus to release adrenalin and cortisol. These hormones speed up our heart, breathing, metabolism, and blood pressure. This all prepares the body to react quickly and effectively to a difficult situation. The increased blood flow improves eye sight, strengthens muscles, The liver releases stored glucose to give us more energy. Sweat is produced to cool the body. None of that is a bad thing when we do have a difficult situation to deal with.

The problem is that we perceive stress in situations that do not need all this physical body change. That is why I say we are what we think! Our bodies respond in a very physical way to our thought processes. Negative thinking bring about a mental perception of dealing with those difficult situations that need to be stressed over. Rather than doing something about those situations we just think about them stressing ourselves repeatedly but not using the body's physical ability to do anything about it.

I have situations in my life that could and sometimes do create stress. There is not an area in my life right now that is running smoothly. There are continuing problems with administration and staff at Mom's facility. Mom is having constant problems with constipation and falls. There are family problems on many levels. We are selling the house Dad built in 1953.. the family home. I am still trying to finalize Dad's will after 2 years. My daughter is graduating and needs a job. I could go on and on. I do know those situations that can create stress. What I don't do is let myself over react to each and ever situation constantly every day. I do what I can. I change the things I need to change. I accept those that I can't change right now. I prioritize. And when somebody says somethings that could set me over the edge I put it in perspective.

My daughter is graduating in May. It is 5 hours away and will take me being away from home for 3 days. With the facility issues, somebody needs to be available for Mom. One sister, that helps occasionally, plans to also be out of town. Another sister that could come for the weekend decided to insert drama into the situation. She was not ask in the right way. Nobody planed for a place for her to stay. The sister that is here occasionally is ALWAYS out of town. Blah Blah Blah!! Her negativity could have definitely pushed me other the edge. Instead I wrote her back and said.... I will be out of town X days, sister will be out of town X days, you can stay with any niece that you call, sister will stay home if you don't come. The choice is yours to come or not. End of story. The other sister's response was nothing more than her own frustration and since my last e-mail she has not responded at all. It was in no way a reflection on or about me. I saws it for what it was... her own problems. Yes it does affect my situation and could have pushed me into a flurry of stressful reactions but I didn't let it happen. I accept it for what it is. If the sister that is occasionally here doesn't step up I will hire somebody to visit with Mom over the weekend and go. You fix what you can, you put the rest in perspective, and go on to the next.

What I don't do is take on the problems of others as my own. If I accept a challenge then I do it because it is what I need or want to do and then leave it at that. If it is something I do not want or need to take on I let others deal with it. You can't take on difficult situations for somebody else and then blame them when you find yourself in that difficult situation. That creates resentment which only complicates life. The choices are yours, not theirs.

Yes, we can find ourselves in situations where we have over extended, blame others, and have expectations that others will not meet. In that case we have to make different choices, understand the situation, and find ways to change our thought process. Again... What happens is not nearly as important as how we react to it.

And with that I am headed to Mom's facility once again to deal with yet another situation It might amaze you but I said that with a bit of a chuckle. Oh well... here we go again!! I will get to spend some time with Mom in the court yard that I have worked so hard on in the last two weeks... after I deal with this current situation. Life is what we make it and that is guided by nothing more than our thought process!

Love, deb

 
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Old 04-28-2012, 04:37 PM   #13
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Re: Wrestling with GUILT!

Hi ChrisNY, I'm new to this world of Dementia and it is troubling and emotional - so I really feel for you. What we all need is a sense of perspective. You must not let yourself be responsible and thus feel guilt for a situation that you have no control over - that's the way to making yourself sick.

Step back, acknowledge that you are doing the best you can in a very difficult situation and know that you can't change things without the willing assistance of the major participants.

I don't know how the aged care system works in the States - maybe you can shop around for another NH which is more willing to help with your FIL. Meanwhile you need to take your MIL into your confidence. Be honest - your husband and you both need to have it out with them - tell them both the situation - how it is making you feel - don't put up with it in silence.

Lay it all out for them and tell them what you want to do (put Dad in NH or whatever) and why. It may not like it but it gives them a chance to get used to the idea. Ignore the rest of the family - if they are not prepared to assist in the day to day care then they can have an opinion but not a say - that's up to you and hubby. Good luck my friend

 
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