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Old 04-27-2012, 08:34 AM   #1
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Questioning my decisions

Hi All,

It has been a while since I have posted but I need to talk to people that understand what I am going through. My Mom can no longer do anything for herself. I hate the nursing home I selected for her, because I have caught them in so many lies. I asked if she is getting any exercise? They tell me yes we do range of motion with her every morning. I am there in the mornings and I do not see this being done. I have showed up at the nursing home at 8:30 in the morning. Mom is still in bed and breakfast started at 8:00.... I just wonder if I had not shown up, would they have feed her breakfast or left her in bed?

I want to bring my Mom home, but I know I cannot take care of her at home. I want to find her a new nursing home, but I think at this point in the disease this would not be a good idea. They told me in March that she had 2 to 6 months to live. Her kidneys are not functioning properly, her lungs and heart are not doing well either. Hospice is now on board.

I want the good Lord to heal my Mom...Mom still can say I love you and yes, but that is the extent of her talking. I am angry, sad and I just want to cry but for some reason I cannot cry. I think I must believe if I cry then I am believing that my Mom is dying and that I cannot accept right now. Sure could use some wisdom from you kind people on this board.

Love,
Julie

 
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Old 04-27-2012, 10:37 AM   #2
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Re: Questioning my decisions

Hi Julie

Oh honey.....sorry, so sorry for what you're going through . I lost my dear stepdad in January, and it is just sooooo.......hard. Crap! I'm angry for you that the nursing home is falling down on the job. Glad you have hospice on board though. Hopefully Deb will give some of her amazing advice about dealing with nursing homes. That woman knows how to make things happen.

I feel your pain coming right off the page, and I just want you to know that I soooo understand, as do others here that have walked through this horrid disease and lost loved ones to it. Even though I knew we were nearing the end with stepdad, his death still hit me really hard. I also relate to the feeling-like-you-need-to-cry-but-you-can't phenomenon. I think we all react differently when we're facing this kind of loss. I also wasn't able to cry for awhile, but then when it was very apparent we were down to the last days, I cried and cried hard. Actually buried my face into his arm (he was non responsive at this time, they didn't call it a coma, but his body was in the process of shutting down, he was not able to respond to us anyway), and cried SO hard.....sobbing tears.....just wanted to hold onto him so tightly.....it was gut wrenching, but necessary. Then for the next 3 days I was able to sit with him. I still cried, but I had released the floodgate.

Just know that whatever you feel, when you feel it, how you feel it, it's okay. You mentioned hospice is on board. There should be a social worker and a chaplian available to you. Have you sought them out? I would highly recommend that. The literature hospice provided was most helpful to me more than the hospice folks themselves (we only had him on hospice a week before he passed), but I know alot of people here have received great support from the hospice team.

Just know we're all here!!! I'm trying to check the board more often just so I can reach out to people like you! Now that I've seen this disease all the way through and have lived to tell the tale, if I can give one bit of comfort to one person, then I want to do just that. Take very good care of you. Let us know how it's going. I am sending you one HUGE {{{HUG}}}!!!!!

Love - Jan

Last edited by TC08; 04-27-2012 at 10:39 AM.

 
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Old 04-27-2012, 12:01 PM   #3
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Re: Questioning my decisions

About breakfast, my FIL sometimes does not get up at 7:30am or 8am given severe stage. So they give him oatmeal at 9am or 10 am whenever he is up near the nurse station instead of the cafeteria.
I sure hope if your Mom gets up late, they will still give her breakfast.
Sometimes we don't push the patient to get up for breakfast. My FIL is in severe stage so naturally he sleeps more. They still try to get him up at 9 am. Sometimes he is up earlier.

Just because you drop by to see one incident, it does not mean they are not doing the jobs. It is true it is not perfect but they cannot watch the patients every minute like one on one personal care. The NH changes their programs at times and maybe they happen not to do the exercise that day. Not that they should say they have done so.

This is the sad part, if you take her home, for sure you can do one on one care.
Maybe you can consider hospice for her at this point? I don't know about your home situation, but if you consider home hospice, the hospice people will come to your home to do that. Or you can do that in this NH. Some private NH does better but the NH is not perfect and it is not one on one care.

I am sorry you feel so sad. It is a difficult position for you to be in. Please talk to the NH to find out what you can do.

Hugs,
Nina

Last edited by ninamarc; 04-27-2012 at 12:02 PM.

 
Old 04-27-2012, 03:16 PM   #4
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Re: Questioning my decisions

i so feel for you. sometimes we need a good cry. i know we all overthink so patience has to come into the picture. trust me i know thats easy to say and so hard to do. take deep breaths think a little more of your well being and hugs to you.

 
Old 04-27-2012, 04:02 PM   #5
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Re: Questioning my decisions

Julie, I do understand your frustration. There are so many emotions crowding in on you that it is difficult for you to deal with them all. So you sit stunned. Your mind will catch up. Give yourself time. Be patient with yourself.

As for the facility. As Mom sleeps more they will probably let her stay in bed longer. If they are doing range of motion, ask when, now often, and tell them you would like to watch. Ask them to give you a time and who does it. Ask for enough information that you can catch them red handed. Range of motion is probably not going to do a lot to improve her current condition... but they have to be honest about what she is receiving Breakfast can be served at any point that she wakes up. Dad loved to stay in bed and many times was finishing his breakfast just before lunch was served. They just saved him a plate. Keep notes and talk to the unit coordinator or nurse. If that is not satisfactory talk to the next management level... and right on up the line. If you can not get some satisfaction... then by all means move your Mom. At the stage your Mom is in it is not going to cause many of the anxieties that it does earlier in the disease. It is her care that is important.

Do use the Hospice social worker. My Hospice social worker is my life line. He ask me if I would like for him to check in with me and I said... SURE! Since then he has called at least once a week. It's not always about Mom. Actually most of the time it's about my feelings and concerns. He is amazing! Your Hospice team leader or nurse can get you in touch with your social worker. Yes, they do have wonderful literature. Also make sure the Hospice nurse knows your suspicions about the care facility. They do not work for the care facility but for you. The nurse can help you determine what is going on. It's a second set of eyes on the problems there. The social worker should be visiting Mom and well which is yet another set of eyes. Our Hospice also has CNA's that can be requested and volunteers that will visit with Mom. I have made use of both.

There have been problems with Mom's facility for the last two years. The first year it was amazing but an administration change sent it into a tail spin. A year ago, I called Hospice because of the deterioration. I now have a nurse, a social worker, a CNA, and a volunteer that all visit once a week. They are all coordinated by a team leader who visits one a month. The Chaplin is there twice a month. All those eyes checking and coordinating. It keeps the care facility honest! So bring your Hospice team on board with your suspicions about the facility. They can even assign a CNA to stay with Mom for a few days to see what is going on.

Find out who is the governing agency in your state government. Here DHSR... Division of Health Services Regulation is the state agency that oversees all care facilities and hospitals. Know who they are. When talking to the administration I make sure they know that I know who to contact if things are not right. Most care facilities are not scared of lawyers. Your lawyer talks to their lawyer for years and at some point, if there is a judgement, the lawyers get paid. The state regulatory agency can fine the facility, suspend their admissions, suspend their license, suspend their medicare medicaid reimbursements, or shut them down. That puts pep in the step to fix a problem!!

So rather than wrapping yourself up in emotional turmoil... take action. If Mom is not getting the care she deserves.. then investigate the possibilities of moving her to another, better, facility. Yes, there are good ones and bad ones. Mom deserves a good one.

As for the other emotions related to Mom's current condition. Yes, it is difficult to accept that we are going to lose our loved ones. We want to believe that it is going to get better or go away. Yet we know it is not going to happen that way. That conflict between want and know can paralyze us. Acceptance is not a moment but a process. Our minds only accept what we can handle in the moment. When we grasp step one we can go on to step two. The timing of this is very individual. Knowledge is power. So learn all you can. Talk to everybody you can. Talk to the social worker, clergy, family, friends... anybody that will listen. Write down your feelings in a journal. Type to use here The more you can verbalize and organize your thoughts the better they are to understand and work through. As with TC, at some point that dam will break. You are probably scared to start crying because you don't think you will stop.... but you will. It is ok to cry. It is ok to feel whatever you are feeling. What you don't want to do is get stuck in a quagmire that will not let you move forward. You do need to be able to find some relief so you can spend quality time with your Mom between now and the end. These are the moments you have left so grab hold of them, and your Mom, as long as you have her. Your Mom needs you right now... and you need to be with your Mom

Love, deb

 
Old 04-27-2012, 04:16 PM   #6
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Re: Questioning my decisions

oh sweetie if I could reach out and hug you I would, I have just lost my mom two months ago and it is still so fresh in my mind and feelings. I wanted to be the strong one for the family right up to the end and then I just could not content with it. I struggled so hard to keep my mom living that at the very end I just could not be there. i left the hospital about 1/2 hour before my mom passed. I was home with my husband and it felt right for me. My mom had other family members with her at the time. wow did the dam burst. When the time comes to cry it will happen and please let it no matter where you are. I too was incesened with the goings on around my mom and fought to make it better. I was with her 12 hours a day and if something was not right I made it happen. You are your moms advocate and until it feels right to you jump in with both feet and find a reasonable solution..

hugs judy..
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Old 04-28-2012, 05:11 AM   #7
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Re: Questioning my decisions

Dear Deb,

I think you are the kindest person and so infomative. I appreciate you words of wisdom and love you for taking the time to respond. I will start with all your ideas and move on from there. Knowledge is power! I just cannot get over what an amazing person you are. Thank you!

 
Old 04-28-2012, 08:23 AM   #8
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Re: Questioning my decisions

Julie, I just hope that something I have learned over the years (learned the hard way) can help somebody that is going through a similar situation. There were those that helped me and I just need to pass that on. So in a way I get more from this than anybody else. It validates the struggle.

Remember that Mom is still with you. Don't get too wrapped up in everything else that you don't have moments to enjoy her. Sometimes we use these other things to divert our brains from pain. Focus on Mom, stay in the moment, and grab the moments you have left ... I am about to head to Mom's facility to do the same!

Love, deb

 
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Old 04-30-2012, 12:15 PM   #9
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Re: Questioning my decisions

Sorry for what you are going through. It is never easy!

A few thoughts

Regarding the NH, there must have been a reason why you picked it. If they are well rated (number of stars), then they are likely doing a good job even if you cannot see it.

If this is the first time for her in a NH maybe it is just a matter of being upset with the situation and the necessity of an instituional setting, and not so much the place. We want the best for those we love and we hate to see them in this situation.

I would not automatically assume the items you mentioned were lies. Often my aunt wants to sleep late and misses breakfast; they save her the tray and note it on her chart. Sometimes she doesn't get up until 10 or 11 AM and they accommodate her. Often my aunt turns down exercise - they will keep on offering and try to persuade her, but they cannot really "make" her do it. this also is noted on her chart. If they offer it 20 times and she declines, that is noted in her chart. Especially if your Mom is coming to the end of her journey, she might be sleeping more and be more inactive - and that could be happening wherever she was. Finally, sometimes when there is a visitor they will hold off on the patient's activities until the visitor leaves. I am not trying to defend them but only to make the point that sometimes there is more going on than meets the eye.

If you have concerns about her care, then ask to meet with the nursing director or supervisor with your concerns, ask if these things are noted on the charts.

Presuming that yours is well rated, I am not sure what a 'better' NH would be in this situation. If she is truly within months of dying, then it seems like the health/medical and palliative aspects are important than things like breakfast time and exercise. If Hospice is involved then that is another double check on what is going on there.

If you think there would really be some benefit to moving her, then you could do so, but I would just be clear that her current care was insufficient and about what the benefit actually would be .

Julie, I would wish for miracles for all of us, but I think part of you knows that there is not going to be one for your Mom. Sometimes I think we get stoic when someone is at the critical stage because we know we have to keep our wits about us to make good decisions for them. It is not fair and it is terrible when bad things happen, but, it is what it is.

I think if you can you should reach out to Hospice both about the stages of what you Mom is going through as well as your own feelings about your mom's eventual passing. They have excellent counseling and materials available about the mental and emotional processes of dying for both the person and family members that are very beneficial. The mental processes can be more complicated for someone with Alzheimers or dementia. Death is inevitable for all of us and at some point we realize that developing a mechanism for acceptance is a good idea.

Good luck to you and your mom.

 
Old 04-30-2012, 12:44 PM   #10
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Re: Questioning my decisions

Suzy,

Thank you for your reply....I hear what you and alot of other people are telling me and that is that I am not dealing with Mom's end of life. I do not want to lose her, we have become really close, she is only 74 years old. You are right for the stage my Mom is in, the nursing home is caring for her, she is feed, her skin looks good, and she still smiles quite often. I am there everyday and I am just so mad right now that I cannot make things better for her. I have some soul searching to do.....

Love,
Julie

 
Old 04-30-2012, 07:08 PM   #11
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Re: Questioning my decisions

Julie, we all go through this. None of us wants to lose our loved ones. Our hearts want it to be better when our minds know it is not going to be. I Mom is well feed, her skin looks good, and she smiles often... that is what you want. Adjusting to the reality of the situation is a journey in itself so be patient with yourself. If you are like me, despite this horrible disease, I now have a closer relationship with my Mom than I did before. Nobody wants to lose that. I do hope you will talk to the Hospice team, especially the social worker. They also have grief counselors. Request a session. This is the long good bye and you could well benefit from the insight

Know we are all with you......

Love, deb

 
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Old 05-01-2012, 08:35 AM   #12
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Re: Questioning my decisions

Please do not be hard on yourself.

It is very VERY hard to lose someone you love, and especially hard to see an older, vulnerable person , who probably has been through so much in her life, have to suffer now. If she is going to have to die at only 74, at least it should be easy...it seems so unfair and unnecessary for her to have to suffer like this now.

Being mad is, I think, a normal part of the grieving process, but do not be mad at your own self that you cannot make things better. At first with my aunt, I go around for hours in my head, trying to figure out how to make things better for my aunt and after putting myself through the mill, I would realize, yet again, I simply cannot do so, it is out of my power. Sure, there are a few little things I can do, and I do them, but in terms of really making things better - no can do no matter how I would try. Maybe if I won a few million dollars

As long as you are there for her and doing your best, you can be able to look back without regrets.

Sometimes if you project and spend time thinking how bad you will feel when she dies it takes your emotional energy away from making the most of your time with her now, and getting the peace and rest YOU yourself must be needing. Instead, stay in the moment and make the best of the time you can, with her now, while she is still alive. Cherish the good of any moments where she can smile or say she loves you or understands that you are there with love. You will cherish them forever.

We all know we are all going to die, who os us sooner, who of us later. The ultimate outcome, for us all, is inevitable. When things are pointing to it being sooner, instead of hoping for a "different" outcome, we can hope for a "easier" outcome. With Hospice on board you have a very good partner for making sure your Mom does not suffer physically unnecessarily and comes to whatever peace she can and that can make a big difference.


Thank you for your reply....I hear what you and alot of other people are telling me and that is that I am not dealing with Mom's end of life. I do not want to lose her, we have become really close, she is only 74 years old. You are right for the stage my Mom is in, the nursing home is caring for her, she is feed, her skin looks good, and she still smiles quite often. I am there everyday and I am just so mad right now that I cannot make things better for her. I have some soul searching to do.....

Love,
Julie[/QUOTE]

 
Old 05-01-2012, 09:28 AM   #13
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Re: Questioning my decisions

Thank you Deb and Suzy for your post. I am trying very hard to live in the moment. I do cherish every smile and I love you I get from Mom....They are moments that I will always hold in my heart. I will be taking baby steps for the next few days, months or for as long as I need baby steps. I love this sight it is such a wonderful place to come to and know that people understand what you are going through.

Love,
Julie

 
Old 05-01-2012, 10:52 PM   #14
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Re: Questioning my decisions

Baby steps are good Any step in the right directions is good. It's not easy but you have already survived so much you have to have faith in your strength and let that carry you through to the end. Hang in there Know we are here for you....

Love, Deb

 
Old 05-24-2012, 08:42 AM   #15
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Re: Questioning my decisions

Hello,

I am taking baby steps but I still am confused. Mom is bleeding somewhere and they told me Mom would probably not with stand surgery so we are doing nothing about it. Mom has a cyst on her kidney they tell me they want to find out what is going on. I told them no because I am told she will not withstand the surgery. Now Mom sugar has been running anywhere between 300 and 500 and I ask them to check for a UTI becuase last time her sugar was so high, it was due to a UTI. The nurse ask me if I really wanted them to check her for a UTI since they would have to use a cathater to get the urine. I feel like people are telling me that her quality of life is not good so just do not do any of these procedures and evidentialy one will kill her. I know she can no longer servive with out assistance, because she cannot do anything for herself anymore, but am I being selfish because when I go in her room and say I love you.....she still says I love you too....and I do not want to lose her or that. I am so confused and all hospice says is we are here for comfort and not quantity of life. I would really be interested to hear what you all have to say.....

Love
Julie/CAJ

 
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