My Dad is Still Struggling With Health

[Loverly]

Hello Everyone,
I've been thinking of you all, but wrapped up in our latest medical drama.
You might recall that my dad was in the hospital for GI bleeding that was incorrectly diagnosed as Prostate Cancer. Thought that the good news was going to be the turning point, but he has been very sick.

It took almost 4 weeks to find and stop the bleeding. He was dangerously close to bleeding out several times, catheters and IVs in every possible point of entry to push blood products into him. Doctors telling us that his gut was so destroyed by previous radiation treatments that even if they could find the bleed, he might not survive a surgery and not even knowing if there was enough healthy tissue to operate on.

He survived that, but now has C. Diff and sepsis. Took him to the ER Saturday morning. Thought he was having a stroke. Turns out it was extreme hypoglycemia, so no they are trying to find a new normal for that.

Yeast populating all over him. C. diff eating holes in his perineum.

I don't even know if he has brushed his teeth in the last few weeks.

Now it's May and I feel like I'm going to lose an entire year. I feel selfish and hostile and disappointed in myself for feeling this way.

I am much angrier with him than I was with Kathy. But I'm angry with her too, for leaving me with all this mess to deal with.

In the ER Saturday, we were right by the room where Kathy was treated for the last time. I saw the same nurses and doctors. It was heart-wrenching.

I feel lost.

Thank God for my mother, who came and unpacked so many boxes and set up my kitchen. I'd be eating from paper plates without her. She even cleaned up Dad and called the EMTs when his hemoglobin dropped below 5 and I was still at work (they have been divorced for 20 years).

What do I do?

Jen

 

[lgelb]

Oh, Jen, I wish I had a great answer.
Can his doc write for some skilled nursing care at home? Sounds like there are some Medicare indications for that.

 

[affected]

Oh Jen

I can only say that a few months after Chris died, my brother came for a visit and suddenly refused to go home saying he could no longer look after himself. (long story but his own neurological condition that emerged while Chris was a PALS)

I went into a panic only someone like you would understand. I knew that I was not capable of caring for someone again so soon.

I was able to get him into a nursing home where he has lived since then - that's the short version.

What I am saying in a round about way is that your father may need full time care in a hospital type setting - is that possible for him?
It will and won't help address your anger. It won't stop the losses you are suffering, but it will take a burden off you to be caring for him with so many medical crises and working at the same time! Well I am presuming that he is living with you? I'm sorry, details just don't stick in my head well ...

For yourself, do you see a counsellor?
I battle a certain amount of 'feeling lost' even still at times, it's so understandable in the battlegrounds you seem to be constantly thrust into.

 

[gooseberry]

Loverly, It is okay to be mad. You are worn out physically and emotionally. Right now the thought of having to take care of someone is so bad I need anxiety meds.

What cals go thru is really,really hard. It takes every ounce of grit and perseverance to see the disease through. Now to have another life altering illness to provide care for is incredibly overwhelming.

I would look at assisted living sites that transition to nursing homes with skilled nursing care. It is the beginning of a plan. Pleaee just try to take it one day at a time.

Yoga, stretching,massage,meditation can all help. Talking with a counsellor has been very helpful for me. Meds if necessary. Please take care of you. Steph

 

[Loverly]

thank you for the support.
Dad gifted me with a week off by telling me he didn't want visitors while in the hospital.

the infection seems to be clearing up. I hope he can continue to fight it off after he comes home. I'd like to see him up and regaining his health. I think it's possible as long as the diarrhea stays away.

Tomorrow is my nephew's birthday. My brother is supposed to propose at the party using Kathy's ring. I know I'm going to cry. I hope I don't embarrass myself.

I think I do need counselling. I feel like the only one who is in this kind of grief hole.

jen

 

[Green Queen]

Oh Jen.

Please do see a counsellor. I must admit, I love the expression grief hole. I'm going to steal it.

No one is in the same head space (grief hole) as you. We are, however, shining a big light full of love down to you. We can see you, and are here to help pull you out.

 

[affected]

Do it Jen, find a counsellor you can relax and relate to and do this for yourself.

None of us just leap out of the grief hole, we dig and chip our way out, often with the tools of antidepressants and counsellors and people who understand.

See the counselling as a way to really work out where you are in the middle of all this grief, and how to take some kind of control back in your life. It won't happen overnight, but you don't have to wallow in that hole alone xxx

 

[lgelb]

Jen, I hope it was a lovely party and you never embarrass yourself by remembering what in many ways only you can. That is part of "living on."

I, and I know many others, spend some time in the "grief hole" every day, leaving it in my case to pay rent and not much else as I should [yet]. Probably some of it is that we are selling/donating Larry's collections item by item, as he wanted. Probably another part, which I walked into eyes open, is that my day job relates to wheelchairs.

But I am not wallowing-- rather listening to the past, letting it speak, as it informs the future. I am learning gradually how to listen more efficiently.

Best,
Laurie

 

[Loverly]

ah I know I need to see a counselor, but I am putting it off. There is always something else to do.

the party was very nice and the proposal went smoothly. She said yes! My dad was able to attend (we went from the hospital directly to the party), and he enjoyed himself.

Now I'm in Baltimore for a week on a surprise business trip. Dad and my bf Tim are flying blind and it seems like they are doing well. Though I'm happy to be off duty, I'd really rather be home.

 

[Nuts]

Jen, I find myself speechless. I have a long way to go on this road and already I fear the thought that anyone will consider me the family caregiver in the future.

I'm so glad that your father was able to attend the party and see the proposal, and that you are now taking a much needed break away. I really hope when you return that you will MAKE time to see a counselor (for those around you if not for yourself).

I had a root canal recently. I had gone months not able to eat salad or fruit and drinking warm water. The pain had gone on so long that I forgot was it was to enjoy eating (and you can bet that I wasn't eating the right things during that time). I was so busy with caregiving that I didn't make the time for myself. I hope I remember this lesson....I should have done it sooner.

Much love to you, Jen. I hope that you are enjoying Baltimore.
Becky

 

[Loverly]

Having a very bad day. Spent Sunday in ER waiting for pic line team to come and re insert dad's midline. None of my sibs volunteered to relieve me. Then they were full of excuses when he asked for a ride to see his pcp on Friday.

We had two different social workers visit yesterday. Neither was any help. He stayed in bed all day and soaked the entire bed with bodily fluids, just a day after I expressed how much work it is for me to clean all the bedding and the pillows when he does this. then fell in the bathroom. Seeing him sitting there covered in his own waste, too weak to rise up on his On his ow, I lost my cool. I threw things and screamed and cried. I told off my sibs and then blocked them from my phone.

The new Cabrio washing machine just takes the laundry on a ride. Nothing is clean. The dryer seems to be great at causing holes, which just makes me angry.

I'm in a deep dark hole today.

 

[soonerwife]

So sorry you are having such a hard time Loverly! HUGS! I wish I could do more!

 

[gooseberry]

Can your dads pcp help? Can he order home health , an aid, respite so you dont lose your mind? I understand this is incredibly stressful. If you need to go to your dads pcp alone to discuss his needs do it. Even if you have to contact by phone, the pcp needs to know the true state of affairs and where you are at in your needs.

 

[affected]

Oh my, I can't even imagine going through this with your dad.

I'm just speechless, so all I can do is a cyber {{{{hug}}}}