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living independently?

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Well, here's where we are at......David is going back to OHSU next Tuesday. He will be admitted and get a bunch of tests...an MRI, bloodwork, etc. Then Wed. he will have intra-arterial chemos--two via the femoral artery up to his carotid, and one chemo thru his port. Then he will be discharged on Thursday, and come back as an outpatient on Friday and receive Avastin via IV. Then he will go home again on Friday. I will stay with him in the hospital and I will stay with him in his apartment on Saturday and Sunday and then I'll go home on Monday to Salem (one hour away) and David will be on his own. That's assuming that he tolerates this treatment okay, and that we don't have another unpleasant surprise like we did last month with the BBBD.

Now this is the part that is giving me trouble: David really wants to go back to independent living. I am so torn. He's made huge strides in his recovery from the BBBD fiasco but I don't know if he should live all by himself. Tonight I went out with my daughter Cathy, and as she drove me home, we saw David walking down our cul-de-sac in the dark. It was 9 pm, and it was lightly raining, about 36 degrees. He was all bundled up, with a hat on. He'd walked to a convenience store about 7 minutes away. I came in the house and when he got home I talked to him. I asked him if he would walk around his neighborhood by himself at night when he went home and he said probably. I said that I was having a hard time with my emotions. Part of me felt really glad that he felt well enough to walk to the store, but another part of me is terrified that he will do that when he's back in Portland. He could get mugged and beat up and left in the bushes and no one would even miss him or know that he was gone. Or he could have a seizure or some health issue and be outside in the freezing cold. He said, "That won't happen." I thought about it for a long time without saying anything, and then I finally said, "Did it feel good to go for that walk, David?" He said, "Yes, it felt good." He thought about it and then he said, "It felt really, really good, Mom."

I know that if it was me, I would want to risk a seizure or whatever, to be able to live in my own home again. I don't feel right about coming against him, browbeating him or guilt tripping him, or worse yet, putting a fear in him, about living on his own. It's a balancing act....how do I measure the risks of him being alone against the positives of being independent? He wants to go back to his home....he longs for it, he's sad for it, his heart is there.....I will do everything I can to make it possible for him to live there. I guess I will be driving back and forth to Portland several times a week, to take David for bloodwork, to check on him, to bring him food....I just hope that I am making the right decision about him being able to live alone.

His doctors don't think he should live alone. But you know what? I don't really put a lot of stock in what they think. My daughter Christy and I were talking about the last BBBD treatment, and she said that we never should have allowed them to do the BBBD a second time. She is correct. We knew that there was something wrong. I tried to tell them that David was "off" and they just said, "seizures" and went ahead and did the treatment. I blame myself because I know David way better than they know David, and I knew in my heart that he was not okay. I should have been more forceful about his condition. When I told the nurses that he was not doing so good before the BBBD, they called our NO and he sent the resident NO on call to check on David and to talk to me. I like that NO personally but I can't stand her as a doctor. She has told us incorrect info several times and I don't feel like she knows what she is doing. She comes across as being unsure of herself. The last time we were in ER, I told the ER doctor if the only NO on call was that resident NO, please don't sent her to see us. I didn't want to see any NO if it had to be her. She had told us on a previous ER visit that the MRI they did in the ER didn't show any changes, but the ER doctor said that they saw significant growth. Then the next day, our head NO said there was significant growth...so what the heck was that resident NO talking about? She gave us some false hope and then that made the bad news even worse.....anyway, I should have insisted on a different doctor and more tests or something before the last BBBD treatment. I will never, ever be such a wienie again....the doctors intimidate me, but no more. I'm going to start saying what I think and insisting on seeing doctors that I have confidence in. So when they also think they know him so well and they think he isn't capable of living alone....well, I think he can. And I know he wants to try, so we will try. But if something happens to him, I will never, ever forgive myself.

Well, I guess I just worked through my dilemma. My family all says that we still have two weeks to decide and we should wait and not make any hasty decisions. We really won't know if David can live alone until we see how he handles the IA chemo.

Thanks for letting me put all of my feelings down in writing. It really does help me sort through my thoughts.

Has anyone else struggled with this kind of dilemma---trying to determine if your loved one could handle living alone? How did you make that decision?

Love and blessings,
Cindy in Salem, OR
PS Our NO says that the brain swelling should be down enough to allow a more clear picture when they do the MRI next Tuesday. They should be able to see if the last 3 chemo treatments worked or not. They told us before that they thought there might have been a slight shrinkage but they couldn't be sure because it was hard to tell with all of the edema. So I am very stressed about the MRI. Please pray that the chemo is working......thank you.

Posts: 232
Joined: May 2011

Well, I sure know what you're going through. Having to move our son back home with us was THE hardest thing for our son to cope with. I would give ANYTHING if he could live in his own place.

Our son moved to Washington DC in 2000 because of a job offer. It was too good to pass up. But I worried all the time. He was 9 hours away! Not only did he have a history of cancer (his first brain tumor dx was in 1985, when he was 8), but he is a type 1 diabetic, on insulin, (which is indirectly caused by his previous cancer treatment, but that's another story). Type 1 diabetics are not encouraged to live alone.

What made it worse is that he had no support system there. He had his work friends, and his billiard friends, but he only saw them at those places. We've come to learn that he was pretty isolated there. I think some of this has to do with the fact that he is very small stature...4'9"...due to the cranial radiation he had when he was 8. He did have a girlfriend for a couple of years, and that helped ease my anxiety as I knew he had someone there to help if needed.

My worry was always eased if I could talk with him on the phone every day. If a few days went by without hearing from him, the worry would be over the top.

Well, last April, things changed when he apparently had a seizure at home. We don't know how long he was out but David said that he went to bed on a Friday night and woke up on Sunday morning. Doesn't remember Saturday. When we talked with him on a Monday, we could tell that something was seriously wrong...confusion and slurred speech.

So my husband and I got in the car at 11:30 and drove all night to get there. Took him immediately to the ER and and that's when this whole nightmare started.

We stayed with him for 3 1/2 months in Virginia during which he had his surgical biopsy, radiation and first round of chemo. It was really apparent that he couldn't live alone as he has some serious deficits, along with his diabetes. We had seriously considered renting an apartment there, but rent is sky high there, and we were there without any support network. The stress was incredible.

We knew that we had to get back home, not only to take care of our house but for the support of family and friends. We were starting to unravel ourselves. That meant that David had to move back home with us. If he had a girlfriend there, or a wide circle of friends, then maybe he could have managed it. But not alone. I'll never forget the image of him sitting on his balcony and crying and sobbing, once he realized that he had to give up his apartment and move home with us. Still tears me up to think about it.

Well, that was almost six months ago. Things have settled down some. But I have always felt guilty for "making" him move home with us. I grieve for all this disease has cost him...his job, what few friends he had in VA, his apartment, his independence...his life.

The other day, he gave me what I call a special gift. We were talking about how on Tuesday nights he would play in his billiard league (he was really good at that). And I said, "I bet you sure wish you could still live there, and be in your own place." He said, "right now, I think I'm right where I need to be, at home with my family." That felt so good.

I really think that if we weren't here to be caregivers, David would have to be in a nursing home.

As hard as it is, I would say that you are doing the right thing in letting your David decide if he wants to live independently. He will know when the time ever comes to move home. I would give ANYTHING if our son could have his own place. Even if it meant that we had to be over there a lot, or had home health care aids coming in everyday. Sometimes I fantasize about him living in his own place at some apartments down the street from us.

Sometimes I wonder how we could have ever supported him moving so far away back in 2000. He grew up in a small town, and here he was, moving to a large metropolis, without knowing anyone. But you know, I wouldn't trade that for anything. It gave him over 10 years of living on his own, making a life for himself in a large city. That is priceless.

It's fortunate that your son will only be 1 hour away. Plus, it sounds like he has lots of friends and support system who could stop by and check on him.

I think you should trust your intuition on this matter. And be easier on yourself, in the decisions you have made. If David hadn't had the second BBBD, and gotten worse, then you would have felt really guilty too.

Sorry for the long post. But this issue is near and dear to my heart. Hugs and prayers to you and your David.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Thank you very much for your note, connsteele. Please never apologize for a note being long---I really appreciate everything that you wrote. I thought about you and your son David when I was writing my post because I knew you had to face the same choices we are facing.

The description you wrote about your son on his balcony, crying about leaving his apartment---oh, how that breaks my heart! So awful for him---and how incredibly difficult for you. That's what it would be like for us too.

And I can totally understand the fear you must have felt when you couldn't get ahold of your David on the phone. Being nine hours away would be so hard! I had told my David that he had to at least text me every morning and every night, and he was really good about doing that. But after the first BBBD treatment, he started slipping, and when I didn't get a text, I'd be terrified. More than once, I got out of bed late at night and started getting dressed to drive to Portland to check on David. I thought an hour drive was bad---but thinking about your nine hour drive makes me realize I'm pretty lucky.

Thinking about your son and how he felt about giving up his apartment makes me feel a lot more committed to making every effort to keep David in his apartment. I'm still fearful of the risks, but I know he would far rather take the risks than move home. I would be the same way. And I don't think he's that bad mentally. I've always been a pretty protective mother--my kids tease me about how I always say "drive carefully--wear your seat belt!" like they are still teen drivers....

My passion is horseback riding, and I don't like to ride in arenas. We live in the valley right below the foothills of the Cascades mountain range, and I like to ride in remote, isolated areas, in national wilderness areas, in those really steep mountains. I'm always taking pictures of bear claw marks on trees, bear tracks in the mud, elk carcasses that have been killed by cougars, and occasionally a bear--from a distance! . I show the pics to my family, and they freak out, because I ride alone. I don't have very many friends who will take a whole day and ride in those places, so I just take my horse, my GPS and my dog, and I'm gone. I know it's pretty risky, and I do everything I can to minimize the risks, but I think I'd shrivel up and die if I couldn't get out and get away in the mountains. My point is that it's SO worth the risk to me. So I can understand why David would take a chance on living alone. But maybe I'm a fool because I haven't lost the gamble yet---sometimes I wonder if I live in denial and I just don't face the possibility of how bad things could be if things go wrong---I guess I'm still a little conflicted.....

Man, I sure can ramble! My posts are ridiculously long...and I typed this on my iPhone. Imagine how long it would be if I was on my laptop!

Thank you again, connsteele, for sharing your experience. Blessings and peace to you! Your son is very blessed to have you and your husband for his parents---you have really laid down your life for your son.

Cindy in Salem, OR

I_Promise's picture
Posts: 218
Joined: Aug 2011

Dear Cindy,

The good news is that David has a choice; he made so much progress that he can consider living on his own. My hope is that the next MRI shows reduction of the tumor load, that he tolerates the treatments and every time he goes back for treatments the tumor shrinks again. Avastin can have a drastic reduction of tumor load and has been shown to put people in remission.

In my eyes there are two types of people who have beaten this monster (and live on for decades): 1) the lucky one that never has a recurrence; for some strange reason the tumor does not grow and shrinks spontaneuously or the the initial treatment worked (surgery, rad, chemo) and a new equilibrium happens in the body between the tumor and the immune system. 2) the ones who jumps from treatment to treatment, that every time there is a set back, a recurrence, they go on to the next best treatment available, deifying the odds ( for example, someone in the late 90's being enrolled in a clinical trial with a new drug called Temodar), having multiple surgeries (up to six in some cases). David can be in the second category. He came back from such a hard place and now he is considering moving back to his apartment. Yay ;)

When my sister was diagnosed I told her to pack her things and come and live with me. It is not the same thing as moving back with our parents. She would never agree to that. She moved in with me because she wanted to. I am her best friend, not her mom. She moved in not because she had to but because she wanted to. I was roommate before with our other sister. It seemed natural for her to come and live with me.

Moving in with parents is different: it symbolizes the lost of independence. If David can and wants to live on his own then his happiness deserves it. Plus the puppy will grow up and will become a protector for David. Can any friends or sibling move in with him as a roommate? Or check up on him periodically? Could you maybe set up a medical alert system that when activated, the EMS ambulance comes directly to the apartment? Just some thoughts... I don't know if it helps...

I love your description of horseback riding. We will be ridding half a day at sunrise around the pyramids. I can picture you riding your horse surrounded by beautiful landscape and finding peace. I always wanted to have a horse;)


cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

I spent today hanging out with David, going out to eat, getting bloodwork done, going to PT for pain management, going to the bank, feeding the horse, etc. I used the time to "casually" talk about David going back to Portland. I feel a lot better about the whole situation. In one of my earlier posts, I said that I thought that maybe David had hit a plateau and he had stopped improving. But I think he's even better today. I think that at first he improved so rapidly that it was obvious, but then the improvement slowed down and was not so noticeable--but he was still improving. I asked him today if he still can feel himself getting better every day, and he said yes, he can.

A few days ago, David told me that he wanted to decrease his steroid dose, so we did, and he's tolerated it very well. And today we talked about exercising...and his lack of exercise. He said that he was surprised at how much better he felt after his little night stroll last night. He has spent a lot of time just lying around at my house. I told him that it's a delicate balance that only he can judge---I can't tell how sick he feels or how much pain he is in. If he is really feeling sick or in a lot of pain, I don't want to push him to get up and do stuff and exercise, but on the other hand, lying around all day makes you feel weak even if you aren't fighting brain cancer, and unless he is really feeling ill, he should force himself to get even a little exercise. He agreed with me, and he said that he feels like he's gotten lazy since he's been staying with me. I have a bad weakness....I wait on him hand and foot. I even make up a tray with his food on it if he doesn't want to get up to eat. Even little things...like if he drops his hat...I pick it up before he can even bend over and get it himself. I just always want to help him and make things easier, but I am not really helping him by doing everything for him. I need to stop doing it but it's hard for me. My kids give me a hard time and say, "You're SUCH a mom!" like it's a bad thing. >sigh<

Once again I am feeling like all of this is such a roller coaster ride. This last stretch was a long downward dip, but lately we have been on an uphill ride. I am not complaining, though! I am amazed and I am so grateful that David is doing this good.

So the upcoming MRI--a week from today--is really on my mind. I think that the MRI will be good. David hasn't had any seizures, he hasn't had any bad headaches, he hasn't had any more of those "freezing" episodes....I haven't seen any issues that I think would be caused by the tumors. His problems---nosebleeds, etc.--are more from the chemo and the treatment than from what a tumor would cause...I think. But I'm afraid that I might be wrong. I'm hoping and praying so hard that this MRI will show some improvement. We could really use the encouragement....

Julia, I really appreciate your suggestions about David's living situation. He does have a good friend who is willing to live with him...they were college roommates...but his friend needs to live in Salem because of his job, and David wants to live in Portland. David's siblings are married with two little kids each....both of them have one-year-olds too, that are very active and noisy. It would drive David crazy. (me too) His unmarried (but engaged) sister lives in a tiny one bedroom apt. in Salem...so David really doesn't have anyone to room with. On top of that...he doesn't want a roommate. He loves the freedom of living alone. I totally understand....it's so nice to be able to wander around in your underwear, keeping your place clean or not clean when you feel like it, etc. I told him that I was worried about him being lonely, and he says he doesn't get lonely. I personally like having people around, but I also LOVE my alone time, so I understand what he is saying.

We are going to get one of those medical alert things for him. Hopefully he would be able to activate it if he felt a seizure coming on. I wanted to install a security camera where I could see his apartment from my computer, but my whole family laughed at me and said that David would never want that...it would creep him out, knowing that I was watching him all the time. I guess it was a dumb idea but I was just trying to be creative. Sheesh....

So we are gearing up for the big move back home. We will be headed back to Portland next week for another round of chemo, then David will stay in Portland and I will be headed back to Salem. I don't know what I will do with myself...I will miss David so much. But I will be happy for him too....

Love and blessings,

Posts: 26
Joined: Jan 2011

My brother was almost 19 when he got diagnosed... As he got sicker my parents still did everything they could to give him his independence even if he thought he was hanging out with his friends alone, one of them usually had an eye on him ;) an although he liked to say things like "my parents don't
Let me out of their sight often" or he would act
Frustrated that he was ALWAYS with them... He came to a point where that's what he wanted, no matter how much he denied it he would make things up to make sure my parents always had an excuse to be close by. I remember one instance where a cousin of ours said "wanna go grab food and get out for awhile, figured I'd get ya away from your parents haha" and his response was "you know what my parents are my best friends right now. They do everything for me why would you say something like that!" of course his temper was a bit crazy because of the steroids and all but I thought this might make ya feel a little better .. :) I think of you and your family often. I was just telling my mom About your story. An another note.. I say put it to those doctors;) my brother and parents were fortunate enough to love the local doctor here, and a nurse in particular too... It's nice to find someone or someone's that you trust.. Hope your MRI next week goes well... I can remember how nerve wrecking every one was!

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Hello, Girl2010.

Thank you for thinking about me and David. We are hanging in there. I think David has some of the same feelings that your brother had. In some ways, I provide a sense of security for David. I also do some of his dirty work...I run off visitors when he gets worn out but he can't bring himself to tell visitors that he needs to lie down. I can tell by the look on his face, and I'll say, "David, you don't look so good. I think you should go lie down." If he has had enough company, he'll say, "Ok." If he is doing alright with the amount of visiting going on, he'll say, "Oh, I'm okay, Mom." If he's not living with me...he'll have to get rid of his company on his own! :)

I also think that subconsciously, David knows that I am watching out for him, and that makes him feel secure. He feels vulnerable in some ways, and he knows that I am vigilant and taking care of all the annoying little things that come up, like getting his prescriptions switched over, etc. But I think he's willing to give up some of that security if he has to, in order to live on his own.

David has a lot of doctors that are involved in his case. Two of them---Dr. Morad and Dr. Seymour--are residents, and they are really good. They are both from other countries...I forget which countries. Those are their first names because their last names are super hard to pronounce. I love both of them. They took a lot of time with me when David was in the hospital and they answered all of my questions and were willing to discuss all sorts of different options and scenarios with me. They also checked on David all the time. They came in on Sunday in athletic shoes and tee shirts and sweatpants, unshaven and tired looking--they were obviously concerned about David and they made me feel like they cared. They checked on him twice a day, in person, during the week. David's main NO is a big deal at the hospital...I guess all over the country. He flies all over the world, lecturing and teaching. He heads up a research lab at OHSU and he has a lot of interests, all relating to treating and fighting brain cancer and finding a cure. Our PT here in Salem told me that she had researched our NO (Dr. Neuwelt), and he has a very impressive biography. I respect him but he's a little on the abrasive side. He is a little too busy for my liking. It's hard to get to talk to him for more than a few minutes because he's so busy.

We had absolutely awesome nurses in the hospital during our week-long stay. I really bonded with them. They spent a lot of time with me and David and I can't say enough good things about them. They felt like family by the time we left.

Thank you again for thinking of me and David. I think of you and your family often too. I especially thought of you during Christmas and the New Year.....I can't imagine how hard it was for your family. I hope that you all were able to spend time together and help each other. I haven't ever experienced a loss like yours, but I know that the pain must be so intense. I still am praying that God will continue to give you and your family strength and peace....

Love and blessings,
Cindy in Salem, OR

Posts: 248
Joined: Apr 2011

YOu know when my husband first came home, before he was released to go back to work, I waited on him constantly. I was the same way, if he dropped something I was right there to pick it up. Then one day he told me, he said Look I appreciate all you do, but I can do for myself and I want to do for myself as long as I am able. He said IF the time comes that he can't then that's when he would need me to do those things but right now let him be a man and take care of himself. I understood that and backed off. Of course I still do things, but not as much as I use to. I think David may feel the same way. It may make him feel more like a man if he can do things on his own. They don't want to feel like they have lost their independence.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

It's so true. I know I need to let David take care of himself. I don't even think about what I am doing...I act before I even realize that I'm doing it.

Today I made a big breakfast and suggested that we all eat together in our dining room. David was fine with it, and I was glad to see him up and about in the morning. But after breakfast, he said he had a headache and he called his two friends who were coming up tonight to go to dinner with him and he said that he didn't feel up to having company. He went to bed and he's pretty much stayed in bed all day. He doesn't look good either. But I'm telling myself that our days will be like the weather...some sunny days, some rainy days...maybe tomorrow will be sunny again. I think that we may have done a little too much yesterday.

Thanks for sharing your experience, sadinholland! :)

Love and blessings,
Cindy in Salem, OR

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