home alone

My father went from being a full time worker and always keeping very busy to being diagnosed with GBM in April 09.  He has had many ups and downs as to be expected.  I feel like he is so alone.  I wish I could see him every day but I do call.  No one is home and I think he is so bored.  It makes me sad he is all alone.  Doctors have suggested senior center but thats not him.  What is everyone elses love ones doing during the day to keep busy.  I don't think this is good for his future. 

I'm trying to find balance... working just enough that I can make ends meet (scrounging along) and spending all the time I can at home so Andy isn't alone all day. He doesn't need nursing, he needs company. What has really made it possible for me to work more than just 8-10 hours a week is the compassion of a few friends who have committed to coming by and just casually hanging out.

Does your father have any friends from work, church, neighborhood... anyone who could rise to the challenge? If he has someone in the house from 10-12 am, or 3-5 pm, it makes the rest of the day not so lonely because there is a plan, and the day feels a lot more structured. Even if the person isn't a great friend, or is a teeny bit annoying, LOL, at least there's something to react to.

Is there an organization in the town that provides housekeeping and companions for elders? We have something called "Just Friends" here... I know several people who work there.

Does he play poker or bridge? Can he do online things? Another person I know said she signed her mother up for the auction and antique magazines. Whatever he can get interested in.

If there is a YMCA nearby someone could give him a ride there and they provide therapeutic exercise which can help with muscle tone and balance. Any possibility there?

You are a loving daughter to think of all these things. He must be a loving father. I hope something works out.

Sarah

Hello,

I am so sorry to hear about your father. He was diagnosed the same month Jay was. Your father is lucky to have you looking out for him.

Everyone is different, as you indicated he would not be interested in going to the senior center. Sometimes people want to be alone, but I agree with Sarah that occasional visitors during the day would probably pick up his spirits. Hopefully there are other family members, friends, or even neighbors that could stop by. My neighbor has become our best friend and comes whenever I need her.

I made a decision when Jay was diagnosed that I would take a leave from my job to be by his side. Our situation is different because he cannot be alone. He lost his vision when the biopsy was done so he cannot take care of himself. I don't know if it was the best decision financially because we are living off the little we had saved, but I am determined to stay at home with him.

You may want to contact the American Cancer Society, I know they have volunteers, also the churches, and the senior center may even be able to send someone with similar interests to stop by. Other than visitors, maybe rent some movies and some audio books, they are great way to relax.

I wish you and your father the best. Our website family is here for you whenever you need us.

Take care,

Lori

You don't say how well your father is--is he able to drive, does he walk well, etc. etc. I have faced many of the same questions myself over the past two years. Even though I care for my 90 yr old mother with alzheimer's, there are still many hours of the day to fill. I make lists of little projects--a room that needs touch up paint, plantings for the garden (not at this time of year, of course). Maybe it's easier for we women who have so much to do in a day we have trouble finding the time. I've talked to my medical team about that, about why women seem to survive longer than men--it's because they have no choice but to stay busy. My mom needs to be bathed and fed, her bed made, her entertainment set for the day, her laundry done--as well as the rest of the family. Men are accustomed to their work being outside of the home, so they are more lost without that. If he's well enough can you assign him some tasks? Does he like to cook? Work outside? One of the hardest things for me to overcome was my inability to work and make a living for myself. I felt so useless. I still grapple with it. But I try to stay as upright and active as I can because I know it's vital.

As for being alone, you may want to gently feel him out about that. I must admit I enjoy my solitude. I guess I've had so little of it in my previous life that it's a welcomed break. I also get very overwhelmed with a lot of people around, or even a constant stream of one visitor after another. Many GBM patients do. I don't know how you can subtly determine if your Dad has that same issue, other than to visit him with a couple of other people in tow and see how he reacts, see if he withdraws or has difficulty joining in on the conversation. That will give you some clue. Regardless, it probably won't assuage your guilt, but it may make you feel better about his ability to fight this Beast if you know he's content with his life and his surroundings.

My father is still what I would consider active.  He drives takes walks but still seems sad most of the time.  I can not imagine what it has been like to walk in those shoes of his.  I hate hearing "I wish I were dead" or "why me" but understand.  I never thought of my father like this he has always been such a fighter.  If you read my other posts you know my mom has taken a back seat to all of this and I think that is what tears him up the most.  Her live has seemed not to change a bit.  In fact she is taking off from work today to go shopping..WHAT...she has only missed two days from work since the beginning.   Sometimes I am mad at him for letting her be like so many year and expecting a change when he got sick.  Yes most would but but not her but I don't this comes as a surprise to anyone.  I just wish he could see how good he looks and how blessed he is to still have some what good health.  Some how some way we will move forward!!

On Nov 03, 2009 12:57 PM vic01 wrote:

My father is still what I would consider active.  He drives takes walks but still seems sad most of the time.  I can not imagine what it has been like to walk in those shoes of his.  I hate hearing "I wish I were dead" or "why me" but understand.  I never thought of my father like this he has always been such a fighter.  If you read my other posts you know my mom has taken a back seat to all of this and I think that is what tears him up the most.  Her live has seemed not to change a bit.  In fact she is taking off from work today to go shopping..WHAT...she has only missed two days from work since the beginning.   Sometimes I am mad at him for letting her be like so many year and expecting a change when he got sick.  Yes most would but but not her but I don't this comes as a surprise to anyone.  I just wish he could see how good he looks and how blessed he is to still have some what good health.  Some how some way we will move forward!!

Hi Vic,

I want to respond to the "why me?" comment. Only once did my  husband say "why me?" and that was at the beginning of this journey (in February). I looked at him and said "why not you? - what makes you different from all the others out there suffering (children, etc.)?" He looked at me and said you're right! This thing sucks for sure and while all patients and caregivers are entitled to a pity party every now and then (and heaven knows we have all had them) the "why me?" question can never, ever be answered.  A positive attitude is very important. I agree with the other posters on here regarding your place of worship (everyone says church but I don't which faith your famiy is). Most have Caring Committees where members come by and visit. If he is able to get out, maybe some of his buddies can take walks with him.

I can hear your frustration with your mother. Since I do not know your family nor its dynamics, it is hard to make any judgements on anyone.  Personally, I can't imagine not being there for my husband every step of the way but people cope in various ways.  You are an amazing daughter and I hope that you have someplace to go when you need a pity party. This is an exhausting life at times. Please try not to forget about yourself in all of this.