Trying to cope

[kaffinito]

First of all, I am new to this board. I visit several other boards, but did not know this one was here.

I am currently taking care of and living with my terminally ill Dad, who is in in-home hospice. He's dying of cancer, and I am sort of coping ok. If I didn't have the disboards and trip planning to keep me occupied, I think I would go nuts! I lost my Mom 14 months ago to a massive heart attack, and now with my Dad dying I'm feeling at loose ends. Hospice comes a few times a week, and my husband comes to visit me on the weekends, but I just feel like I'm drowning.

Is there anyone else on here who is going through/has gone through this?

Any words of advice or encouragement would be appreciated.

TIA
Karen

 

[PrincessKsMom]

Sorry, I don't have any experience or advice on this matter. Just wanted to send a your way. I'll keep you and your dad in my prayers. Hopefully someone who can offer you some solid advice and further encouragement will come along shortly.

 

[Mackey Mouse]

Karen..hugs, hugs, hugs.

I know you are doing your best to keep your head straight... I know that I deal with Cancer everyday, I am just not where you are right now.
Are you an only child?? Is there anyone else who can come in for an hour or so and let you get out and take some deep breaths? I am asking this, but I know if my loved one was at the point your Dad is, I probably would not want to leave. Sometimes you have to though.

There is a poster on this board who has been through what you are going through right now.. I will message her and give her a link to your post.

We are here for you, you come and say whatever you need to say and we will keep you and your Dad in our prayers and offer whatever we can in responses..

You take care of you too..

 

[kimis]

I have had to watch my mom die with the help of hospice. They are great! They actually have couseling if you want it. Talk to them They also have minsiters that can help. You will be in prayers.

 

[antmaril]

Karen:

I am the poster that Mackey Mouse (Marsha) mentioned in her post.

I recently lost my husband (age 55) to pancreatic cancer. I know these are very difficult times for you, your dad and your entire family. My husband was a Hospice patient for the last days of his life. However, he was in the hospital under Hospice care. I stayed in the hospital with him around the clock for 26 days. I went home (for a couple of hours) three times in 26 days.

There really isn't anything anyone can say or do to make these days easier. However, it is important (very important) to find a way to give yourself a break now and then.

It's sounds a bit cliche', but you really have to take one day at a time. It's the only way to get through it. If you try to look ahead, you'll go crazy.

I'm very sorry for the recent loss of your mother. You are going through very tough times right now.

I wish you all the best. Life is hard. We just have to do the best we can so that when we look back we have no regrets.

Good luck to you.

 

[Mackey Mouse]

Thanks Antmaril... Hugs to you too.

 

[kaffinito]

Thank you to all of you for your kind words. I'm going to try to get out a bit now and then, it's just tough. I'm going to try to get a mini sitter for a few hours, and I will try to talk my brother into spending the night so I can go home and see my cats and husband. Don't know if I can talk him into it though, but I'll try. I do appreciate your encouragement and your hugs.

PS, antmaril, I'm in Michigan too!

 

[Elfstar]

Kaffinito, hang in there. Do manage to make a little time for yourself now and then - you won't believe how much just a couple of hours every couple of weeks helps. And do something special for yourself with that time - a pedicure or massage, it's worth the cost for the boost in energy it gives you.

I'm in a similar situation, my DH has ALS - I melted when they told us it was time to bring in hospice -it's terribly hard when it's any loved one. Hospice is wonderful. And think of the comfort you give your dad just by being there. I'm so sorry you've lost your mom so close to this happening. You will get through this and be all the stronger for having done it. I'll say a prayer for you both!

 

[safetymom]

kaffinto, I will keep you and your father in my prayers. Just remember to take care of yourself while you are taking care of your father.

It's very tough watching a loved one slip away. I am sure your Dad appreciates that you are there.

 

[zalansky]

kaffinito - I have been through hospice with both of my parents, both with cancer. Most recently my father died Feb 2007 from colon cancer and he was at home with hospice. My sister and her husband, God bless them, moved here from NY to live with him and care for him because I have two very small children and could not live there. But I was there as much as I could be. Hospice, I can't say enough great things about them. Towards the end, they did send nurses to relieve my sister because they knew the importance of getting a break. That was a lifesaver for her and her husband. Its very hard to be there and want to help out but also feeling like you need someone there for you too, because its so hard emotionally to watch a parent go through that. I will keep you & your Dad in my thoughts and prayers. Do know that when everything is said and done you will look back on this time as a gift - for both of you. You are giving him a wonderful gift of being there.

 

[alizesmom]

Sending hugs to you. You are doing a hard but worthwhile thing. Talk to the hospice people and see if they have some kind of respite program to give you a few hours off. Karen

 

[Canyon girl]

kaffinito, I am in the same boat. My father has been with us for 2 1/2 years, most of that on hospice. He has a rare slow growing cancer. Is it possible to move your father back home with you so that your husband could give you more breaks? Also, our hospice has volunteers that will come to sit with my father so that we can go out. They would also help with household chores if needed. When we need a big break, our local hospice house will take him for up to 5 days at Medicare expense. If there is no hospice house, usually the hospice will work with a nursing home. I hope that maybe you can get a break. It is amazing what a few nights without obligations will do for the mind! It is a wonderful thing! Will be thinking of you out there, too!

 

[kaffinito]

kaffinito, I am in the same boat. My father has been with us for 2 1/2 years, most of that on hospice. He has a rare slow growing cancer. Is it possible to move your father back home with you so that your husband could give you more breaks? Also, our hospice has volunteers that will come to sit with my father so that we can go out. They would also help with household chores if needed. When we need a big break, our local hospice house will take him for up to 5 days at Medicare expense. If there is no hospice house, usually the hospice will work with a nursing home. I hope that maybe you can get a break. It is amazing what a few nights without obligations will do for the mind! It is a wonderful thing! Will be thinking of you out there, too!

You know, as silly as this seems I never thought about seeing if Dad would go stay with us at our house for a while. Somehow, I don't think he'll budge though! He has really good days and some pretty bad ones, and he likes things "just so"

As an update, my brother did not and will not stay with my Dad to give me a break. The weekend he was supposed to stay with Dad overnight he called me up and said he was working late and was taking his family to the local Renaissance festival. In specially made costumes no less.

Forgive me for saying this, but he's a big giant butt head. If my husband didn't come to see me I would never see him. Or my kids. *sigh* at least I know that things can alway get worse before they might get any better....

Thank you for listening and good wishes to you too!

 

[nannerbadnanner]

 

[Mackey Mouse]

Hugs, hugs, hugs.. some people are so wrapped up in themselves, they cannot reach out.. You are doing the right thing, I hope he realizes that he should be helping.... what a shame..

 

[JandJ]

Karen, I just found your post and I have to say BIG HUGS!! I was kind of where you are earlier this year. My mom passed in 2005 and Daddy was diagnosed with Multiple Myeloma cancer in 2004. In August 2007 he became completely bed-ridden. He was living with my brother and SIL at the time and they did all they could but they worked full-time and didn't want any nurses or anyone to come to the house to help My sister lives in the same area but she's a single mom (one child is special needs) and so she is very busy. Also, the Hospice in their town is for-profit and is really not good! He was moved into the Hospice facility but he rallied and they basically kicked him out after 90 days.

DH and I offered to take Daddy into our home (2.5 hours from my siblings) because I wasn't working at the time, and Daddy was thrilled at the idea. I thought I'd be fine. I said "I can handle this." I did handle it, but it was not easy. Not one day. We were lucky because we not only had the room in our house, and the Hospice here is the best and biggest in the country, but the part that really saved me was that Daddy paid for overnight CNA help. That was a LIFESAVER!! I could never have done 24/7 so those CNAs were worth their weight in gold! I know it's not cheap, but if you can possibly get CNAs to come in one or two nights, or days, a week it will help you tremendously!! Ours came in 9:00 pm to 7:00 am. Also, DH would take one early morning on either Saturday or Sunday of each weekend so at least one day a week one of us could sleep in. I could not leave the house because Daddy could not get out of bed and could not have a catheter - you can just imagine what we went through! My siblings weren't much help because they lived far away.

It's not easy but it is the best thing you will ever do. I don't regret it at all. As I said in my bereavement group "I wouldn't take a million dollars to go through it again but I wouldn't give you a dime to lose that experience" and that sums it up for me. One day I was completely frustrated - I hated what my life had become and I felt overwhelming guilt over that. I told my dad "everything about cancer $*cks!!" and he said "not everything, because of it I get to spend all this time with you." I could cry right now thinking of him saying that.

 

[momto3inmn]

Karen,
First of all to you! I know exactly what you are going through! I lost my Dad to Melanoma cancer at the beginning of this year. Hospice would come in a few days a week, but alot of the care fell on my brother's and I. I also lost my Mom to cancer (colon) back in 1998 (hospice came in then also). Like a previous poster suggested, I would ask hospice if they could have a volunteer come and sit with your Dad so you can get out for a bit from time to time. You also need to take care of yourself (physically, mentally, and spiritually)! Go out to dinner, take the kids to a movie, just to get a break. I wish you all the best. Even if your Dad doesn't say it, know that he really appreciates what you are doing for him! I will keep you in my prayers!
Deb

 

[kaffinito]

DH and I offered to take Daddy into our home (2.5 hours from my siblings) because I wasn't working at the time, and Daddy was thrilled at the idea. I thought I'd be fine. I said "I can handle this." I did handle it, but it was not easy. Not one day. We were lucky because we not only had the room in our house, and the Hospice here is the best and biggest in the country, but the part that really saved me was that Daddy paid for overnight CNA help. That was a LIFESAVER!! I could never have done 24/7 so those CNAs were worth their weight in gold! I know it's not cheap, but if you can possibly get CNAs to come in one or two nights, or days, a week it will help you tremendously!! Ours came in 9:00 pm to 7:00 am. Also, DH would take one early morning on either Saturday or Sunday of each weekend so at least one day a week one of us could sleep in. I could not leave the house because Daddy could not get out of bed and could not have a catheter - you can just imagine what we went through! My siblings weren't much help because they lived far away.

It's not easy but it is the best thing you will ever do. I don't regret it at all. As I said in my bereavement group "I wouldn't take a million dollars to go through it again but I wouldn't give you a dime to lose that experience" and that sums it up for me. One day I was completely frustrated - I hated what my life had become and I felt overwhelming guilt over that. I told my dad "everything about cancer $*cks!!" and he said "not everything, because of it I get to spend all this time with you." I could cry right now thinking of him saying that.

This made me cry. A lot. It does suck, but then again it doesn't. The hardest part is watching him slowly deteriorate into a shell of who he used to be. I am so glad that you posted. Thank you.

 

[kaffinito]

I just want to say a big Thank You to all of you for your hugs and support. You have no idea how much I truly appreciate it!

 

[megthewonderful]

I don't have any experience either, but it sounds like you definitely need a . You are your family are in my thoughts and prayers.