Dying Father, Hospice Care - I'm feeling overwhelmed and isolated

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1

This is a heavy one, for anyone that has dealt with something similar...my father was diagnosed with stage 4 cancer a year ago. Just in the last month alone, he's made a rapid decline, and is now accepting hospice care.

Apparently there are several levels of hospice care, and we entered into the 'crisis' level right away, which provided 24-hr around the clock care. But we've just been informed that they may eventually downgrade the level to, possibly, just overnight care.

My mom is not a strong woman, very dependent on others, and a diabetic. She has not been able to focus or think rationally since my dad's diagnosis, and has gotten worse since the hospice care started. Trying to interview her for hospice was like talking to a black hole - all the stuff she does and should know is lost, and she can't remember things or cope with the stress. At one point she answered the phone, and while talking to the person on the other end, she looked at me and asked "What's my address?" (as in temporary lapse - not senility)

So, I'm hugely worried about the idea of hospice downgrading my dad's care, because my mom isn't coping. I've learned today that his condition is worsening, and am wondering if that will be justification enough to keep hospice full time.

I've spent the last year trying to help my parents get through this, and dealing with my own emotions with the empending death of a man I love so dearly. I've had to do all the research for V.A., Medicare, Medigap and help them sort out their financials and get a will made. As well as helping with driving them to doctor appointments (they live 30 mins from me) and some of the care at home. Meanwhile, I've been trying to juggle my own home life and the care of a 4 yr-old, which is hard when daddy travels 4-5 days a week. I'm exhausted.

Plus, I feel isolated from peers. I had started some new and promising mommy friendships (I just moved to this town) that dwindled in light of my lack of time and motivation (just too exhausted some days) to work at keeping them up. So I feel sad about that, too.

So I guess my question is, have other been through an experience like this, and if so, how did you end up handling it? I really miss having girlfriends and to just be able to hang out. I admit I had some rather superficial ideas about being a stay-at-home mom in this new town, with girlfriends that I can bond and share my days with, having playdate with the kids, and generally having a rich life full of friends. That ideal seems so out of reach right now.

Any advice?

2

Hi Felicia - Let me start by letting you know that I have not been in the same situation as you; however, my heart is going out to you. I can hear the despair in your email!! You are a treasure for taking such good care of your parents and managing your household and trying to stay sane at the same time!! I have added you to my prayer list and hope that your burdens ease.

All that said, here are just my thoughts. You need and deserve an outlet. Since you have already found a group of ladies that you connected with, try to get back in touch. Maybe you can have a short playdate at your home - let them know of your situation and try to get them over for an hour just to hang out and relax and chase the kids around. If you can swing it, go out to dinner/a movie/a drive when your hubby is home. The ladies you met will understand and if they are as great as you think, they will make some time to support you.

If you truly cannot get away for even a short time, then just try to hang in there. This is a terrible time in your life right now, but it will get better eventually. You will have the ideal that you want, it's just not the right time now for some reason.

Above all, don't feel guilty (if you do) for wanting some time to yourself to be you...you are giving all of yourself to take care of everyone else and you need some refueling time. So, call/email the ladies you met, arrange a few hours for hubby to watch the kids (I know he'll be glad to see you smile after a visit with your girlfriends!), and relax for a little bit.

If for some reason your group doesn't respond well, I invite you to come check out our group of moms. We have a great group of caring, supportive ladies. You can see us at http://workingmoms.meetup.com/5/

I pray that all goes well for you!! Best wishes - Christine

3

I am so sorry that you are having to deal with all this, Felicia. You have SO much on your plate, so please don't feel guilty if you can't keep up with it all. Just do the best you can, but know that you still need to take care of yourself as well.
It sounds to me that you could really benefit from some counseling to process the impending loss of your father, as well as the other pressures in your life (your mom, your family). I am not sure of places in Southlake to recommend, though I am sure there are places there. I work at a non-profit in Flower Mound, which is roughly 25 minutes away or so, and we have several excellent therapists. The place is called Youth and Family Counseling and the number is (972)724-2005.
Also, I agree with the previous poster that it would help for you to keep up with those friendships or try to start others. I am part of a moms' group that is SO supportive, provided meals and helping watch each other's kids if something comes up. I found my group (which is for babies born in 2007) on www.meetup.com, and it has been a lifesaver for me. They have TONS of groups, so you might want to check them out.
You may also want to talk to hospice about grief support groups. That might be a good outlet for you and your mom.

Best of luck to you. Keep reaching out to people and don't be afraid to take help when it is offered.

4

I have been in your shoes almost exactly except not with my parents but grandparents that helped raise me. It is so hard and emotional yet you almost feel numb at the same time. My heart is so full of compassion for you and I just want you to know that I understand. I also remember not wanting to share my sad moments with my friends because I didnt want to be the downer of the night so I always felt lonely. We were also moving so I didnt want to leave with me dumping on them...
Reach out to your friends a little more let them know what is going on I bet they would love to help even if its just keeping an open invite to whenever your up for it. I know its hard to have one more thing to do but this is nourshment for your soul so that you can go and be a great support for your mom and dad. Good luck I am praying for you and your family...

5

Felicia,

The girlfriends will come. Right now you need to focus on your mom and dad. If you don't you'll regret that for the rest of your life. Especially if your dad is declining as rapidly as you describe.
The crisis setting will continue as long as the family needs it. I once saw a family in crisis care for over a month. Talk to your hospice liaison, not just the nurse. This would be the person who came out to the house to get all of the paperwork signed and go over what hospice really is. If they already have in crisis level and he's deteriorating, I can't imagine them downgrading his care.
If you need a shoulder, just have questions, or need a playdate for your 4 year old drop a me line and I'll get back to you. I'm just around the corner in Colleyville. I've been on both the personal and professional side of hospice since I "used to be" an oncology nurse.

{{{{Hugs}}}}

6

I went through a very similar thing as you. The only difference is my dad had leukemia for 20+ years, and he died while I was in another state at college.

I flew/moved home the next day and took cafe of my mom. She pretty much lost it, I almost put her in an institution (and I was only 21). She threatened suicide on a regular basis, she literally went nuts, oh I could tell some stories.

I pretty much stayed at home with her every day and night for about 2 whole months (she took time off work to cope and slowly returned to full time). I began working as well, but once I got home, I stayed there with her.

When I met my husband, she caused alot of problems as she was jealous of anyone that took me away from her and she only made me feel 10 times guiltier since she was a lonely widow now. By the way, a LOT of "friends" abandon people when their spouses die. It is in the books and counselors warned us it would happen. And it did, which made it even harder for her.

After I moved out and married my husband, my mom stopped paying bills, checking the mail, cleaning, cooking... she foreclosed on her house and everything. She did it so that we would be forced to rescue her. We have had to pack up her house and storage unit and move her single handedly over 4 times in the past 5 years... she won't even pack or make arrangements, we have to do everything for her. She still hasn't paid her taxes this year...

The point I am making, is that my mom tried to sabotage any relationship I had and her own credit because she was terrified of being alone. She is only 52 and has already lived with my sister for over a year and can't wait to move in with one of us soon. My dad has been dead for 5 years now, and we just now got my mom into an apartment on her own... it is 2 buildings down from mine. She is a loooot better, but only because we had to get tough with her and force her to take responsibility.

She has done some counseling, but she only tells them the "normal stuff" about her being lonely and a widow, they all tell her she is perfectly normal, but she has been given some anti-depressants over the past several years for short periods of time. In her defense, she does have a thyroid problem that can effect her mentally when it isn't in check, but that isn't a total excuse for her past behavior.

All I can say, is to help your mom, love her, show her you are there for her... but once you start to do things for her, she may become dependant on you for everything, and will totally incapacitate herself by doing so.

Maybe you can make a routine, let her know on some nights you will be there and others you have to have time away for personal reasons, but you are always a phone call away for moral support.

I also know what you mean about feeling your own emotions for your dad's demise. I have become the mother to my mom. She seems to have forgotten that her children have lost a wonderful father. Our feeling about it have never really phased her much... now that she has grandchildren (my dad died before there were grandchildren) we reminese on how he would have been the most wonderful grandfather, but that is about it as far as our feelings go.

You need to allow yourself time to grieve. Yes, be there for your mom, help her, give her support, grieve with her, show her you love her, but don't expect yourself to always be the "strong one".

Good luck and God Bless. Message me if you want to chat.

7

Hi Felicia. I was in your same situation 4 years ago with my dad. However, we didn't have has much time once he was diagnosed with cancer. Once we found out, everything went rather quickly. Once hospice was called in, they were there to stay for as long as we needed them. Whether it was a few hours or 24 hours. I have 2 sisters and a brother and we tried very hard to take turns being there to take care of him, but even for the 4 of us it was very difficult. (My mother was in a nursing home). I don't know what I would have done without my husband to keep up our home and help with the kids. So if you are undertaking this alone, I can only imagine what you are going thru. Talk to hospice and voice all of the concerns that you have. If your father is deteriorating as you say and it's getting close, I can't see them lowering their level of care. As for having girlfriends to hang out with, all of that can come later when you are truly able to devote yourself to meeting new people and committing to new friendships. For me I wanted to spend that difficult time with my family, my brothers and sisters and aunts and uncles, neices and nephews. I wanted to be around those who knew how I felt and who felt the same way I did about this man. Those whom this person had affected in one way or another. It was like this for a few months after my father passed away also. This played such a huge role in my grieving and healing process. My friends were always there for me, and always called to check on me, but they knew how important my family was and what I needed to heal. You don't mention if you have any other family besides your mother, but if you do, my advise is to embrace them during this time. It truly does help.

My heart and my prayers go out to you and your family.

8

My father died July 2008. His hospice care remained around the clock, thank goodness, and he went peacefully, surrounded by family. We miss him dearly.

In what seems to be a joking twist of fate, my mother was diagnosed with liver cancer the following July of 2009. This time it was different. I learned from the experience with my father not to go on the emotional roller coaster ride. I moved my mother in with me, which made her care so much easier that it was with my father. Additionally, my mom was a real trooper, and not so helpless like it was with dad. She survived a radical liver resection and is now living cancer free, and independently since November of 2009. I’m elated that we were able to get through this so well, and that she is still with us.

I did manage to make a friend in my neighborhood, who stood by my side through it all, and helped out on a rare occasion that I needed it. She was a real godsend. I only hope I can be there for her like she was for me, when needed.

Thanks to all who contributed your advice. It was very comforting!