The Last 6 Months......

[Mustang]

The last 6 months have been hard. The hardest I have been thru.

I am 38 and my father passed away Nov 18th at the age of 72. After a period of 3 years of not talking to my parents for personal reasons I made amends and we moved closer after seeing their health had declined a great deal. We moved into our new home June 8th 2013. One week before Fathers Day. I made plans to drive one to pick up my folks and have Fathers Day at our new home. At 10 am I called to say I was on my way. My mom said they were both to tired and would have to change the plans. I knew there was more.... I said well I am coming at least to see dad and give the cards my kids made him. She did not want me to come. I went aways. I got there.... The house was a mess like in the show Hoarders. My father was in bed, he had been throwing up all night, and looked very ill. I yelled " What the HELL is going on?" After talking for 45 mins I found out my father had not been eating or doing much since April, and was throwing up a lot. After another 20 mins of begging for me to take him to the hospital he let me.

He was severally dehydrated, malnurished, and his CHF was out of control. He had a liter of fluid around his heart. He was listed in critical condition. They stabilized a few things and according to my father found a small spot of cancer. (He had pro-state cancer we thought had been taken care of in 2000.) They made a plan of ten radiation treatments. Two treatments, they send him home for the weekend. Finish treatments next week. (He was there for 7 days.) Well I call him his first night home, and he was very tired.

Next day I get a call from a neighbor.... my dads unresponsive. 911 is called, I leave for the hospital. I get there he is in bad shape. Temp of 105.6 BP was 70/40. They transfer him to a better hospital and tell us to call family. I get my mom, and we get to the CCU and they tell us he may not make it thru the night. Very long night. He was in full septic shock. They find 3 days later his pacemaker was covered in bacteria. Emergency surgery with a very high risk. Only 10 % survival chance. He pulls thru. But they need to do a 50 day antibiotic treatment in hospital. He had a full blown MRSA blood infection. I visit him every other day.

His wife could not because of her illness. She has a condition where her legs are covered in open wounds. And she has chronic lyme. So she was not allowed to visit him.

My father was not getting better. He was not the same after the surgeries. A lot of pain, discomfort, and mood swings. They transfer him to a hospital closer to me. The old one was 2 hours away. One week before he was to be released we find out my mom has both active MRSA, and a flu. Yet she refuses to go to the hospital. (More on that later. So he is going to stay with us.

It was hard. 12 days into he started throwing up. and then went into a unresponsive like state. Back to the hospital. This was Aug 15. After 10 days they send him to a nursing home. They say he is just very ill. And that the infections, and such have just wiped him out and he needs PT and all that.

Sept 1st the county police where my mom lives call. She has been taken to the hospital after a possible suicide attempt. And her infections are out of control. They transfer her to UVA Hospital via Medflight. She too is in septic shock. Another of many so far long nights. After 15 days they transfer her to a SNF. My father is not getting good care so we choose to send him to the same one my mom is at.

Oct 1st. After weeks of seeing my dad getting worse not better I explode at a meeting with his dr, and nurses. They say he is faking and such. Then I yell " What about his goddamn cancer?" Their response... What Cancer???????? The records of his cancer had not been transferred to them.

By Oct 5th we knew the truth. and it was next to Nov 18th the worst day ever for me. The Dr called and said after a full cat scan, and review of records, my father had less then 6 months to live, and his prostate cancer was terminal. Then 2 hours later another call. He was in worse shape then stated earlier. He had been terminal since 2003!!!!!!! Without any of his family knowing he had been told he was dying and getting treatment without anyone knowing.

After a few more scans, tests, and such the facts became worse.... very quickly. He was given 2 months to live.

Hospice took over, and some wonderful events took place. And some not so wonderful. After 18 years of not talking to his daughter, she came to see him. He held her for an hour just smiling and saying he did love his little girl. Friends from the past came to see him, and my brother saw him once. It was too much for him. He has since had a full mental breakdown and was hospitalized. My mom was and is in denial. Me I did what I had to... spend every minute I could with him. It was an hour and 20 min drive to the SNF but I made that trip every day from Oct 12th till he passed. My wife and kids would come each day on the weekends.

My kids made him happy..He would love it when he could watch tv or play tic tac toe with them.

He got worse as to be expected. Nov 1st full comfort care was started. He was fading fast. The last saturday we went as a family he slept 99% of the time but my wife, kids and I got to say things that mattered. And he said very sweet things to all of of us. We knew time was short.

Monday the 18th....... Wife had a dr appt, and I was feeling very tired. I was not planning to go to see my dad for the first time in a month. I was just drained. I was going to make dinner and at 7:15pm the phone rang.... it was the SNF. I started shaking........ It was my mom. My dad had spiked a fever, and his vitals were not good. He was going to go home soon. I told my wife as fast as I could, grabbed the keys, and got a family hug. I made what was normally a 1 hour and 20 min drive less then 55mins. I run to his room the nurse told me what was up and I went to his bedside. His eyes had not opened all day, and could not swallow or speak. He was gasping for air. I said " Daddy I am here. I Love you daddy, Rach (My wife) loves you, Josh and Jackie love you too." His eyes shot open, he looked right at me, raised his arm a little pointed at me, and smiled his silly half smile. Then he gasped one last breath and went home. He waited for me. It was the best gift I could have ever been given. I will write more a bit later..... there more to the story.... a lot more..... But I have to stop.. feeling a bit raw right now.....

[mfh]

Dear Mustang,

Thank you for sharing the first part of your story. I will watch for the rest of it when your energy and spirit allows. You have been through so much in the past six months and I am so sorry. You have to be just exhausted and I do hope you are taking your exhaustion and need for rest and self care into consideration these days. I am so glad your dad waited to say good-bye to you before he went home. I do know how important a gift like that is, believe me.

It sounds like you still have a lot on your plate in addition to your grief and your mom's illness. Please take care of yourself and do come back when you can and if you wish. We will support you through this.

Mary

[kayc]

Mustang,

I am so sorry for the loss of your dad, for your mom's condition, for your brother's situation. You must be exhausted! You have been there for them and have been steadfast, and it has been hard, but thank God you did it and you and your family gave your dad some happiness...something probably rare to find in his condition.

This can be a lot to deal with...it's not uncommon to feel some anger for the living situation they were in. I hope you can realize that life has just been too much for them in recent years and they may not have always made the best choices, but it's not because they didn't care or love you and your siblings, it's just "too much". Hoarders have special problems that often require a lot of therapy in and of itself, add to that all of the vast physical problems they've been facing, it's no wonder they were in denial...to face it would mean they'd have to deal with it. You have been a blessing to both of your parents. I'm so glad your dad was able to say the things he needed to. I'm sorry it's been too much for your brother to handle, he is responding as they did before him. You can be proud that you have been strong enough to deal with everything...I'm sure you don't always FEEL strong and I'm sure there's been days you didn't WANT to deal with it all, but courage is facing things you dont want to, and you have exhibited a lot of courage.

I hope for some respite for you in the near future and the grace to handle what you must. We will be here when you are ready to share the rest of your story. I thank God you have such a wife and children as to be by your side through all of this, that can mean the world.

As Mary said, taking care of yourself is essential. It's easy to get OURSELVES down when caregiving and grieving...all the more reason to make sure we take good care of ourselves, eat healthy, drink lots of water, avoid alcohol, take walks or work out, and just take time for ourselves if at all possible, even if it's just short spurts. I took care of my MIL nearly three years when she was bedridden with cancer and I found "time for myself" was nigh impossible, I had babies to take care of at the same time, not to mention all of the family that came to visit during this time. Looking back I don't know how I got through it, but I did. And Mary took care of her husband until he passed, so she also knows what it is to be a caregiver. It's exhausting but also a very special time, we have special memories because of it.

[Mustang]

Thank you..... I have had a rough few days. I have found myself holding on to things a bit harder. My mom is not well.... she was ok for a bit but has lashed out at the whole family. She has said and done really really mean things the last few weeks. I could handle it until she started bad mouthing my father. She sent me a 3 page e-mail, just tearing him apart. I got very angry. Was my dad perfect? No... but he never cheated on her in 48years, he always supported her, and well I told her I need space. And so she went off on the whole family. Told us all to go to ^^^^ and to leave her alone. That was 10 days ago. She has since spent 5000 on needless junk, and is getting ready to AMA herself Monday from the SNF. They can not stop her. The house has no power, no water, no food, and she canceled her insurance by non-payment. I spent all day on the phone with the SNF, ombudsman, and APS. She is refusing help, and hung up on me and has blocked my e-mail. I called my brother and sister.... same response. Only thing I can do is have the cops check on her each day. Thats all I have been told I can do. I am beside myself.

[kayc]

Have they condemned her house, given her a deadline to clean it up or it'll be uninhabitable? She may have to accept help then.

My mom has mental illness so I've been dealing with it all my life. Now she has Dementia and it's softened her so she's finally easier to be around, go figure. I know what it's like to have a mom lash out for no reason...they aren't themselves...well not the person they were meant to be anyway. I've finally made my peace with it and realize I love her and know someday she'll be okay, but it's been a tough road. My mom was never cooperative either. We had to take her to court (took a year) to get jurisdiction to put her in a dementia care facility, we were so worried in the meantime that she'd hurt herself and it was by the grace of God that she didn't end up dead. We had to sell her house to pay for her care, it's really expensive. We couldn't take her into our own homes because we worried she'd endanger us, kill our pets or burn the house down (on purpose), she was that nuts. But now, she's just a fragile old lady in a wheelchair, it's amazing.

Good luck to you, I know the frustration and the worry. It WILL play itself out, it always does. You wouldn't be upset if you didn't care about her. Sometimes they're their own worst enemy.

[mfh]

I am so sorry. You have to be just worn down by life and death and frustration. Your mom clearly needs help but until something else happens or if she finally allows you and your sibs to help, there does not seem much you can do. I hope things quiet down and that she will see the need for assistance. In the meantime, as Kay said so well, "it will play itself out". This is time for you to take care of you, grieve your father's death, communicate with your siblings if that works. We are here for you with support and wishing we had a magic wand to solve this but we ARE here for you.

Mary