Help for my parents

My Mom was diagnosed with GBM Level IV in May of this year. She has undergone radiation and is still doing cycles of Temodar.

My parents are very private and very few people still know she is sick and my Dad has been her primary caretaker. My Mom can't take care of herself, but she thinks she can. My Dad is extremely stubborn and his way is the only way to do things. He is getting worn down and has mentioned that he just can't care for her anymore.

He has mentioned a nursing home for her, but she will not willingly enter a nursing home for care. He needs some kind of break though. He does have help in the morning and a little in the evening, but other than that, he is doing everything on his own.

I am an only child and live about 6 hours away. I am just looking for some pointers or resources to help them manage their conflicts. I want to drop everything and go over and help, but even then, I don't know where to start. I know I have to start being the adult in this situation, but I am scared to "be the parent" in this situation.

I guess if there is anyone out there who has experienced something similar, I could sure use a pep talk on how I can possibly begin to help.

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I don't know  your situation in regards to what your cancer treatment centers offer but here in Canada, most cancer clinics give you access to a social worker who is on staff at the clinic. What they can do is let you know the options that are available for your mother and your father. 
There is even hospice which can be utilized for a short term respite so that your father can get some rest and regroup.
There must be some way to get your father some much needed rest and still make your mother feel she is not being shuffled off to a nursing home.
As I said, I would start with the cancer clinic and work outward from there.
I am sure you will get more replies from people who have more experience with the system than I do.


Stay strong, focused and determined & may God bless.

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Zekemata:
I don't have any suggestions, but I am very interested in the replies you get. I am the caregiver for my husband, with no family nearby and he has no friends anymore. As he becomes more and more disabled we will have to have this exact conversation. I work FT, and I NEED to work. The logistics, the finances and the emotions of it all seem overwhelming to me.
good luck,
BTWife

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I won't recommend nursing homes. they are terrible. based on my own experience when i placed mom in a private assisted living and the cost was very high and still they don't care. she fell couple times and many times i was there i call them on purpose to see how long that is take for the staff to come to her room. It takes 45 minutes for them to show up most of the time and imagine if she has the urge to go to the bathroom. The nursing homes are depressing. I took mom out of there and instead i rented an apt for her and hired a lady living with her. i won't mention the quality of food!!!

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Dear zekemata proud of ur post stay positive pray for ur mom like nother friend says do ur best to keep her away frm a nursing home there is no love or comfort in such place seek nursing hospice give ur mom positive vibes love an encouragement our journey is rough but our lord will guide us l will keep all families in my prayers this is my best an most potent weapon that all of us can rely on l constantly pray for all my neighbors may the lords blessings be with ur family

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I would not do the nursing home thing. If their insurance does not pay for some home help then maybe you could help by paying for someone to help once a week to give your father a break. Kathy, Toms wife.

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Thanks to all for sharing your thoughts with me so far. It is certainly kind of each and every one of you to offer help, advice, and encouragement. Man, this process sucks, but hearing from others is a big help.

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Zekemata:
Did your mother execute a health care power of attorney while she was still able to? That may a consideration when it comes time to make the difficult decisions.

BTWife

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Zekemata,
In this instance it is appropriate for you to step up and get involved. There should be help for your parents via the county or state agencies if nothing else. Check out the local Council on Aging, and local hospice facilities/organizations and palliative care on the internet. These groups can point you in the right direction specific to your area. I would agree that you probably don't want a nursing home.

My mom had dementia for 10 years and my dad did all care as family was in several other states. I did, and you can do all the research and make the contacts and then advise your Dad as to what is available. He may balk, but will most likely be happy when the ducks are all lined up for him.

Good luck with your research.

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It is a very tough situation you're in. It's so scary to feel like you need to step up, but have no idea what to do.
I will try to give you some suggestions, followed by a longer tale of what I personally went through. Sorry this post is REALLY long.


For your parents' immediate situation, see if you can find a local senior home care agency with a listed care manager or care coordinator. You might get a hint early on if this person can help you if they really listen to you - if they just rattle off cookie cutter services, get off the phone and try again.

For the longer term, I highly suggest finding a palliative care doctor. They can help your parents integrate all the different medical, logistical, emotional, family, etc aspects of your mom's condition and care.


I really relate to your feeling of not knowing what to do, being scared to step in. A small step that might really help is just be there and listen. Hear the things your dad wants to say - maybe he wants help with specific things, maybe he's really scared about how your mom is doing, maybe he's really tired and needs some sleep. Maybe you could start with one particular problem he's struggling with rather than worrying about everything. I don't know either :( I hope my extremely long post at least lets you know that someone cares and is rooting for you.

In general, I'm guessing it feels like you're doing this alone and in the dark. It's true that no one can make these decisions for your family, and there's no guidelines about how to do it. But keep reaching out, over and over, in any way you can, and you'll find that people have taken your hand.


So... my experience...

The best thing I did for my parents was find a palliative care doctor. This doctor really listened. Our appointments were often an hour or more long, and she met us in the hospital often. When all the options were awful, she helped us reframe the very complex choices in terms of what we as a family valued. I think she even helped us figure out what we valued - it's easy to forget about that stuff when you're faced with an awful medical situation. I can't tell you how much it meant to have a doctor who listened, especially later, someone who already was familiar with the medical situation and with the family dynamics. She could speak doctor speak and find out what was really going on, digest it, and compassionately give us what we needed to know. She was with us through the whole process, through all the different specialists and facilities. Since both of my parents are stubborn, I was amazed to see how skilled she was at listening yet guiding the conversation towards the often really hard choices we all wanted to avoid discussing.

The other person who became a part of our family was a nurse navigator. I found her by calling a local senior stay at home care company, and asking to speak with their community care manager ( in Albuquerque, NM, it was Cindy Brown - http://www.homeinstead.com/144/aboutus/Pages/OurTeam.aspx - maybe you can find some key words in her bio that will guide your search). I can't vouch for the national chain Home Instead, but this lady went far out of her way, listening for a long time as I talked about what my family was going through and in the end referred me to an outside service because she thought was a good fit for us (and it was). Our nurse navigator became familiar with what my parents' medical and day to day needs were, helped me check up on them, asked great questions, thought about things outside the standard medical boxes. My husband commented that she had become the other half of my brain, she knew so much and I relied on her so much.

I tried literally everything else - private care coordinators, social workers, every council on aging/brain tumors I could find, not for profit aid agencies.

My dad was adamant he wouldn't consider any kind of facility, even though it became increasingly obvious to everyone else that my parents needed more help. My family was also very private - didn't have any family friends or members of communities (like church) who they could confide in and get advice from. Also very few people knew he was sick. My parents are also very stubborn. My dad said NO to a lot of things just because I think he knew someone else wanted him to say yes. I was trying to help them, but I didn't get my breakthrough connections until it was too late for them to stay independent in their own home. I think the idea of accepting help is really hard for people, especially help with something as personal and meaningful as taking care of your spouse. I also found it really awful to butt in. I felt like I was telling them how to live. But objectively, they needed help and couldn't get it for themselves, so someone had to try.

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I really appreciate your response. Thank you.

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Hi, I just lost my husband after an eighteen month battle with GBM. We called in hospice and they provided a great deal of relief. This is a very sad and difficult disease. My heart goes out to you.

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