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mamasbabygirl

(LONG) I am torn and still a mess...

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Hello everyone, my friends and family who are here. I need help, support, whatever you can offer me right now.

The hospital Drs. and therapists have determined that mom is not well enough to go to an acute care physical therapy rehab hospital. They feel that she simply could not do 3 hours of PT and she may feel defeated if she tried. So, they are sending her back to the short-term rehab unit at the nursing home. Now, considering that her insurance was getting ready to release her prior to this surgery bc she was not making significant progress, I know that this will be a matter of days, maye a week or so, until we are faced with what the next phase is...

I WANT MOM TO MAKE THE DECISION AS TO WHAT HAPPENS WITH THE REST OF HER LIFE. We knew that she had these 2 tumors after her first surgery, but decided not to tell her or anyone bc it would possibly impede her therapy. Then, SF talked me into talking mom into going to the rehab unit at the nursing home. I AM TIRED OF LYING TO HER. I AM TIRED OF EVERYONE BEING IN DENIAL.

I want to talk to mom next week when she wakes up more and have that talk where I ask her how she would like to spend the rest of her life.

In my mind, the options are (just thinking aloud here):

1) Move from the rehab unit to the actual nursing home wing. There are no Drs. that visit, unless there is an emergency. There will be no therapy. Mom is not kept clean and uses the bedpan bc she says that by the time they get to her, she has lost the notion. We come and visit and I can clean her as much as I can be there and still raise my family. Pro-less arguing with SF, she could take a bath 2 times a week. There is a risk that things could turn bad and we would not be there with her. We are basically out of control..

2) Come live at my home and schedule 2 people to be there at all times. I can work 2 ten hour days at work, to free up the other 5. Between my SF, me, John, my brother, uncle and aunt, we can manage this. I know that the noise of my kids would be very stressful for her and us, but again, my family has never put anyone in a nursing home. My mom was the caretaker for my grandparents. She changed her catheter, made meals, kept grandma clean and was there with her and hospice when grandma passed on..

Was it easy for her? No, but she did it out of love. She mentioned to me a few weeks ago that when grandma was in the hospital for blood clots, she stayed with her the whole time. I think she was trying to tell me something...

I want mom to make the decision, not us, while she is still able. Am I wrong? Should I just let SF call the shots as to what happens to make him comfortable bc he is her husband? My uncle says he agrees with me and he will participate in the conversation with SF as to leaving it up to mom.

If I have this talk with mom, basically being honest that she is NOT going to get better and her physical state will not improve, will I devastate her and force her into depression and giving up? She told the therapists that if this surgery did not work, she hoped her mind would "go" bc she did not want to know.

What should I do guys? I have to start work..

love you all, me

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My honest opinion is that the family has to make the decision based on what is BEST for your Mother. Where will she be the most comfortable? Will she feel abandoned in a nursing home? Will she be uncomfortable in your home? Very hard decisions, but at this time in her life, I think your Mother's care and comfort are the most important things.

Every family is different and what is right for one is not right for all. I think if you keep what you are trying to accomplish in sight, you will make the right decision.

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Lori~

I feel like I missed a chapter in the book here-- how do you know she won't get better or improve? Did the doctor say so? Your mom is so young I would think that she could get some skills back with rehab...??? I'm confused, maybe you could give us some more info. I'm sorry you are having such a hard time. I really feel for you.

Rochelle

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Lori,

I don't normally stick my two cents worth in regarding matters like this, but I wanted to share a little personal experience with you. If I had things to do over again with my dad, I would do them differently. My dad got over pneumonia but was still too weak to go home. It was determined that the best course of action for him was to be sent to a skilled care rehabilitation section of a nursing facility. He was supposed to get extensive care, physical therapy and get strong enough to come home. Long story short, they took terrible care of him. He was there for 10 days and every day that we went to see him, we had to beg for everything that he got. He had a bedsore and they were supposed to put medication on it every three hours. We had to go ask them to do it everytime or they just wouldn't do it. He was supposed to have three breathing treatments a day - he was lucky if he got one. They never once cleaned the urinal by his bedside. They gave him high blood pressure medication without our knowledge when his blood pressure was extremely low. He ended up with blood pressure of 70/56 and they left him alone to use the bathroom after he had been diagnosed with colitis. He passed out and fell and hit his head. They called us and told us he fell but that he was o.k. We rushed over there and it was obvious he was not o.k. We insisted that he be transported to the emergency room. When we got him there, the doctors told us that he was completely septic. He died less than 24 hours later. The cause of death was clostrodium difficule colitis, urinary infection and spectic shock - lung cancer didn't even make the list. I wish we would have just taken my dad to my house. It still haunts me to this day that he spent the last days of his life in that awful place. I wish I would have insisted to my mom that we take him to my house - I know he would have been taken care of so much better. I know this might not help you, but please trust your instincts. My opinion is that if it is possible for your loved one to be cared for in a loving, home environment even with some outside assistance, then that has to be a better option than putting them in a strange place where the people don't care about them like you do. My dad was treated like "Well he has Stage IV lung cancer, so why should we bother?" He deserved the highest quality of care up to his last breath and your mom deserves the same. I am saying prayers for you - I know how hard this is. I get teary just thinking about it. God bless you!!

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You can ask your mom which situation she prefers WITHOUT telling her she isn't going to get better.

As mortals, we can't really know that she won't get better, and she may surprise everyone.

You don't have to "crush" her or send her into a depression or "give up" if you just talk to her about the decisions that have to be made regarding her care and where she will/wants to be cared for.

Think it thru with your head, then make the decision with heart. You will do whats best for your family, I'm sure.

Sending lots and lots of positive thoughts your way and prayers for your mom.

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I agree totally with Bronbear. I would do everything humanly possible not to have any relative or friend of mine in any sort of nursing or rehabilitive facility unless it was close enough that I could be there every day/all day. If there was a choice and they could come home, that's where they would be. I told you a while back the story of my mother who was "killed" by the care she didn't receive. Again, don't want to scare you, but this is the way it is unfortunately.

Good luck and I do know you'll make the right decision for both of you.

Joan

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Do you have any other option for places that your mom could go? How about the aunt and uncle that you mentioned? Would they be willing to take her in with the understanding that there will be a rotation system of people that will come in to help out so that all the responsibility will not be on them? From your other posts, I know you have a lot happening at your house so maybe another house would be best for your mom to rest and regain strength. I don't know, Lori.....I have trouble with the nursing home idea because I don't think patients recovering from surgeries and such get the kind of care they need but this should not be put on you alone.

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Take her home. Hire a live caregiver, ask everyone to cheap in with the helps salary. Enjoy each moment with mom. Make her bedroom as comfortable as possible. Get her a hospital bed, a big screen TV, and nice comfy recliner, and spoil her. Easy for me to say, but I actually been this road with my mother in-law and her husband refused to do anything considering he was also 94 years old. I have to do what's right, in her case, money was no object, so I know she deserves the best and first class care. My mother in-law lived another 10 years with a good help and good nutrition. God Bless you Lori. Take mom home and relish each moment with her.

Just my 2 cents.

Love to all

Malou

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Hi Lori,

Sorry for your dilemma. It has to wreak havoc on your mind. I know you will come to the right decision.

My mom was in a nursing facility after she broke her hip, she was 94, so there was no complete healing, and she was wheelchair bound. She was placed in a nursing facility which was in the same building as her assisted living.

This facility was really good to her. So we did not have issues with where she was and how she was treated.

But according to what you said about the nursing facility she was in before, they seem to have a lack of caring. That should set off a siren there.

Perhaps a different facility, one with a good reputation and one you can call people for feedback on care.

What is wrong with her home and help to come in there? Is this because at your home it would give you the time with you family and also you can be with your mom when you want.

I know you will make the right decision. I know many years ago, people took care of their own. They never had retirement or assisted living facilities. I for one am grateful for them. My moms place had a lot of class, it was beautiful with so many activities which kept her busy. She also made a lot of friends there.

The nursing part was of course not as nice but she got great care there. The actually had lots of activities there also. They had bingo, which they wheeled her to 3 times a week, entertainment and stuff like crafts to do. So she was kept active. But that was because she still had her wits about her. There were people there who were just existing, it was horrible to watch them, as they were in a world of their own.

I just don't want you to give up on your mom as maybe she can be rehabilited. But once she is bed ridden that will not be possible.

All Iam saying is maybe there is a good facility out there that would take good care of her as she is still young. This operation is still fairly new, maybe there can be a more positive change.

If not, then you will have to make that decision with your SF and your family. I don’t know if she will know at this point what is right for her.

Darn, Lori this is a hard decision. You have to follow your instincts.

Maryanne :wink:

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Hi Lori,

I want to give my very strong opinion on this subject. I hate nursing homes...As a therapist who has worked in some and as a caregiver(My Mom was in one for rehab for a few weeks) I can say I see nothing good in a nursing home. Im sure ther e are some good ones but I think it is rare. When my Mom was in we had to stay 24 hours with her so what is the point???I wont get into the poor care and the many mistakes they made unless you ask but we caught many errors... If it is doable...take her to your house...nobody will care for her like family and she can get home health for therapy etcIf she gets better she can always go home. I did not give my Mom a choice on this I just said youre coming home with me, I want to care for you because My Mom would say no because its too muxch for me.

Anyway , sorry to go on and on but I believe taking our parents home if its feasable is the best thing.

Sorry for all the stress you are going through...praying for Mom to get stronger.

Janet

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Lor--You sound heartbroken every time you mention the nursing home. You do... And if she's having to sit in her own waste she's not getting the BEST care that she could get... I don't think this should be about placacting your step father even if it pisses him off... This needs to be about your Mom and what YOU can have peace with as a daughter.

And from experience--the 'noisey kids' will be a welcome sound for your Mom. Much better than the unsettling impersonal sounds of a nursing home.

Hang in there. You WILL Find a way through this.

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((((Lori))))

What a hard situation but you have to do what you think is best for your Mom! A nursing home wouldn't be my first choice,but unless you can get a someone to help out 24/7 I'm not sure if there is any other choice. Remember you have Kids a Job, you can't do it all! You need to take care of yourself too this is a very stressful time.. I will pray that you are given the strenght to make the right choice..

You & your Mom are in my Prayers always!

Michele

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Lori,

I am so confused.... I thought Mom just had the bracytherapy done? Don't they think this can help? Are the doctors telling you she won't improve? I just don't get it???

I have some pretty strong opinions, but don't want to share them till I have your answers.... I am praying for you my friend... life is so damn hard.

Sharon

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Lori: mys siblings and I took turns taking care of my brother as he approached his last days of lc at my mother's home. If I were you, I would find a way for everyone to take turns being with your mom all the time at your house or another relative's house. Also, my brother was on medicaid and the state paid for homecare nursing 2 hours a day, three times a week.

Don M

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Oh my gosh, I did not expect for everyone to come here and listen to my problems when everyone has them!! I am so appreciative and feel so blessed to have the love and support. THANK YOU.

My mom is not able to do much physically. She can move her right side some. She can slightly move her left arm, nothing else on the left side though. She cannot move in bed by herself. She is bedridden. She has gained 54 pounds since August. Her left side is so swollen, probably from the blood clots in her legs.

Her entire care team, therapists and Drs. at the hospital and Drs. at rehab say things that indicate that things will not improve. Her insurance will not approve her for much more than a week or so at the short-term rehab place at the nursing home. So, we will be stuck with these decisions then.

When I talked to the social worker about this yesterday (I asked why every other Dr. is all gloom and doom and talks about just making her comfortable, while her neurosurgeon is doing brain surgery), she told me that Dr. Warnick's job (the neurosurgeon) is to do the surgery to try to lengthen her life. She said that she has had many families who have had the surgery done and then another and then maybe another and finally say, wait, what are we doing here?

See, although we here on this website are pretty darn knowledgeable, my parents are not. I have led the way to this point, but now what? My SF told me he thinks mom will go back to work. Call me negative but you would have to see my mom. It is horrific...

Also had some additional drama today that I did not need. When I got to the hospital (before I got to mom's room), SF went off on me about how I was overstepping his and my mom's wishes (she does not want to go back to Health South-the 1st rehab place-I'm well aware of that). I asked what he was talking about. Apparently after I expressed my concerns to the social worker, she talked to Dr. Warnick who is now recommending that mom stay another day in the hospital to reevaluate her tomorrow (Friday). They do not expect a miracle, but maybe...The social worker told my SF that someone in the family was questioning why mom was not being recommended for rehab. So, he went off on me. I told him that I want mom to be involved in the decisions of her how we manage her care (thanks Katie). He disagrees and is adament that she should not come home/to my house once insurance releases her from the rehab at the nursing home. He went off about how it will be only me and him bc it takes commitment from other people and we won't get that. I am aware of all of this, and it would be more than difficult for us, but mean so much to her...

He left the hospital and mom got upset after he left. Now, she can barely speak, is in and out, but told me that they thought she was sleeping when the social worker told him that they were going to reassess her tomorrow bc of "that person" in the family. Mom started crying as she was telling me. He apparently said "She (me) is not even in the equation". Mom spoke up and said yes she is-she is my daughter! She also said that she wants me to be in her medical advocate/medical POA form. I reassured her that we will work together, but I just needed to know how she wants to live her life. We talked about the pros and cons of both (the nursing home has a bathttub she can be lifted into but that the care sucks) and I just told her we'd talk about it at another time, but that the door remains open and I want her to know that she will always have a voice as long as I am alive. She told me I should never feel guilty bc I have a job, 2 kids and a MIL that she did not have when she was caregiving for my grandma. It gave me much comfort...

I have decided that I am going to call Cancer Family Care tomorrow to get some counseling for myself and to make sure that mom has someone to talk with as well.

I have to run for now. I need to go catch up with everyone else's posts. I am hoping to read some good news..

Love to y'all...

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(((Lori)))

Of course you have to do what is best for her and sticking to her wishes as closely as possible. It must be so hard for you to balance everything and I am learning all about the step parent thing too. My step dad ultimately has control over my moms care and it is frusterating sometimes.

I personally, if at all possible, would do whatever it takes to get your mom out of a facility and into your home.

Balancing work and kids and your mom's care will take everything our of you that you have to give and then some, but you will never have any regrets.

I am so sorry it has come to this. I will continue to pray for your Moms health and for strength and peace for you and your family. Somehow this has to work out.

Kim

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Oh Lori -

You are amazing. You truly, truly are. I wish I could "tell" you what to do...I can not. yet, I can echo how wonderful it is to have someone at home...it is so very difficult, but in our case, I am so glad my mom was with us. We discussed an in-patient hospice program as well as some assisted living situtations....we couldn't do it. I think you and your mom need to make the decision best for you guys -- I don't trust your SF to do what is anyone's best interest. Perhaps you should become your mom's legal advocate, etc while she is able to assign these rights to you.

I know this has been a very, very long road for you. I pray that what your actions should be will become very clear. For so long, I prayed for specific things when my mom was ill (heal her, let me keep working, etc.) -- the best thing I did was simply give it to God -- asking him for the strength and peace of mind to deal with his will....answers became very clear to me at that point --- I pray the same for you.

All my love,

Holly

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Geez Lori, I feel so bad for you. I wish I could offer some useful information that might help you but I don't have any. Being from Canada, our health care systems are so different...I can't imagine the stress of having to deal with insurance companies and the like when you already have so much on your plate. May God Bless you and keep you strong. Best thoughts, wishes and prayers to you and your Mom.

p.s. Holly mentioned becoming your Mom's legal representative...here we call that a *Power of Attorney* and it gives you sole and exclusive rights to make decisions as required for the person who has executed the document on your behalf. Is that something that might be possible for you to obtain? I just fear that your SF may become more unreasonable if your Mom's condition doesn't improve quickly enough for him. (((Hugs)))

Lynda

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I have followed your post for some time now and while I don't have any new words of wisdom for you... you seem to always have your moms best interest in mind and are a very good advocate on her behalf. Trust your heart and don't second guess yourself! You are doing a wonderful job! I pray that I can be as strong and focused as many of you here are - all of you give me inspiration daily!

To add to the suggestions by Holly and tatlyn, I would suggest that you may want/need to have two power of attorneys ("POA") done, one durable power of attorney for finances and a durable power of attorney for health care. As the names imply, one will allow your mom to appoint a "agent" for financial purposes and the other will allow her to appoint a "agent or health care proxy". These can be the same person or different people, but it is a good idea to have two different legal documents. These do not have to be created by an attorney (though you may want one to do them), there are downloadable "templates" available on the internet and depending on what state you are in the completed forms only need to be properly witnessed or notorized to be legally binding.

One thing to consider -- today many hospitals have a patient name a health care proxy when completing their admission process. Perhaps your mom has already named SF as a proxy during such a process? If so, this can be revoked (best to do in writting) and she can then name a new proxy.

Another thing to consider is a Living Will, also called "Advanced Directive" or "Health Care Directive". This is document would allow her to state what type of medical treatment she does or does not wish to receive if she are too ill or injured to direct her own care. Most often this document also include a durable power of attorney for health care. There are many verisons of this type of document but one that I have found to be exceptional (IMHO) because it covers so much that might never be discussed otherwise is "5 Wishes". It can be ordered at http://www.agingwithdignity.org/5wishes.html

Here are a couple of other links that you might want to look at:

This site has a lot of information explaing the durable power of attorney (both financial and medical) and the living will. http://www.nolo.com/article.cfm/objectID/22DE9DC9-8C59-424C-A212CA594C7E7A8C/309/292/295/ART/

This site has links to all state downloadable Living Will documents:

https://www.legaldocs.com/htmdocs/livin_st.htm

And finally, the U.S. Living Will Registry electronically stores advance directives, and makes them available to health care providers 24 hours/day via secure Internet or telephone or fax. You simply register at their site and send them the documents, they send you a wallet card and stickers to put on your drivers license and insurance card to let healthcare professional know that you are registered with the Living Will Registry. The website is: http://www.uslivingwillregistry.com/default.asp

Sorry for writing a book... hope you find this information helpful. I have been doing this for my Dad so I had all this information research and we are discussing/working through it all now. I can attest to the fact that these are hard conversations to have ..but they are SO important!!

God bless and guide you in this decission! I will be praying for your family!

Cindy

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Hi, Lori,

I just wanted to say hello and let you know that I can feel how hard and painful your days and nights have been. I would imagine that you feel like you just want to crawl into your bed and pull the covers over your head and wish that all of this would just go away.

I am going to be praying for some peaceful days, restful nights, and happy moments for you. I think that's what you need most right now.

Love and hugs,

Peggy

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Hi Lori:I just wanted to offer a quick post of my support and best wishes for yuu and your mom as you continue with your struggles.

Cindy gave you some excellent information.

Don M

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