My Dad Now Has Hospice

[Amy61]

My Mom, who was my best friend and biggest supporter, died unexpectedly Jan 9, 2003. My journey along this grief road has been such a roller coaster, but had dug my way out of the terrible fog. Now my Dad, who has worsening dementia, has been admitted to Hospice care. The fog has returned. I need to work, but here I sit unable to focus to complete tasks. I want to be home with him. He has a live-in caregiver. She and I are working as a team to allow Daddy to remain at home. Daddy has very bad emphysemia and a lung infection that Daddy's body just could not get rid of. In the words of his dr., his body is worn out. Death is not imminent at this time, but I'm feeling such a need to be there. I go during the evenings and on weekends. I'm a single parent, but thankfully my daughter is with her father most of the time during summer. His dr. thinks he may have 2 months left. I had almost forgotten this awful exhaustion.

Sorry, I'm rambling. I'm new here and like the site.

Thanks for listening....

[avsqr_dancer]

I can really relate to what you are saying. My mom just died a month ago, so my grief is still very fresh. It was also sudden and so unexpected. But I am functioning, doing everything that I have to do. But my dad also has dementia and a host of other ailments. His kidneys have failed and he is on dialysis. He lives about an hour away, but I do try to visit him as much as possible. He constantly forgets that Mom has died, and when we tell him again, he just does not believe it. I think that my grieving process is being complicated by his condition. He also has a live-in caregiver who is very good. I had thought about moving him in with me and the care-giver, but my dad had such a negative reaction, that I have decided it is best to leave him in the home he has known for over 50 years. It is so difficult to know what goes on in the minds of those with dementia. I think that somehow he believes that Mom is still somewhere in his house. So I think it would be too traumatic to take him from his house. But I always wonder if I am making the right decision. It is so difficult to see someone you love deterioate mentally, as well as physically. I wanted to let you know that I do understand and can relate to your pain.

avsqr_dancer

[Amy61]

Thanks for the reply Dancer. Similar roads we are traveling. I'm so very sorry about your mother and it is so very fresh. I could really relate to your Dad not remembering your mother died. Dad is usually aware that Mom is gone, but on several occasions he has asked me, "Amy, where is Frances?". When that happens, it's as if my heart stops. I try not to look at him strangely, but it is so hard. I usually turn the question around and say, "Where is she Dad?" and he can usually come up with the answer. I've been pretty open with Daddy. He has clearer moments and more confused times. When he seems to be thinking fairly clearly, I have told Daddy that there are times that he gets confused and that it's ok. I assure him that there will always be me, his caregiver or my brother with him to make sure he is ok.

I'm learning first hand what anticipatory grief is like. With my Mom there wasn't time. She was sick but expected to be released from the hospital and then she had sepsis and was dead in 2 days. There was no anticipatory anything...only reeling shock as I helplessly watched her condition crash.

I'm so sorry for your loss. Do whatever you can to take care of you in the process. That's hard to know what will do that sometimes.

[avsqr_dancer]

Thank you, Amy, for your quick reply. Concerning my dad, people have told me that it'll will take more time, but that Dad will probably eventually realize that Mom is dead. I agree that honesty is best. We went as a family to tell him, but I am the one that actually broke the news to him. It was definitely one of the most difficult and heartbreaking days. He did seem aware that Mom was dead at the funeral and afterwards with all those people in the house. In fact the next day, he landed in the hospital with pneumonia. I really didn't think he'd pull through that, but he did. I understand anticipatory grief-it is like we are losing our dads a little each day or "inch by inch" as I call it. Yet the final death will still be traumatic. I don't think one can ever be truly prepared for it no matter what. With my mom, she was having trouble breathing so they took her to the hopspital. When I found out, I was 6 hours away on my way home from a trip. Two hours later, my brother called to say she had died. So I didnt even have time to get to the hospital before she was gone. I am doing my best to take care of myself. But I find there are so many things to do after a person dies that I am was not even aware of. Take care of yourself too.

Dancer

[Amy61]

"Quick reply"

It's because I'm sitting here at work doing NOTHING! LOL

I've got to get myself more focused. Wish someone could tell me how to do that....

[avsqr_dancer]

It's hard to stay focused on work when so much else is going on. I in school working on my master's degree. I only have one more class and my thesis to do, and I'm trying to get a headstart on the thesis now. But it's be particularly tough to concentrate on that when especially when I feel down. They say working helps, which I guess is true.

[AmyLea]

I'm the "Amy61" who posted above. I could not remember my screen name or password, as it had been so long since I posted. I wanted to post an update on my Dad. He passed away peacefully on February 7th at home with Hospice care. I was sleeping on the floor next to his hospital bed that was in the den. My husband (I married in December) was awake in the same room and shook me awake when he noticed Dad had stopped breathing. It was that peaceful. One moment he was breathing and the next he stopped. It was not always that peaceful. He had slipped into a coma as his lungs began to fill. His dementia was much worse, he had been bedbound since October, but thought he had been out of bed yesterday. Bless him, he couldn't understand why we kept telling him he could not get up.

Not much has changed regarding my lack of focus at work. The job is on somewhat shakey ground. My therapist feels I need to give myself time to heal from years of high level stress and find work that is the type that, once you leave, it's done and nothing major pending on your desk left from the day before. I agree with him. Once my husband finds employment, I'll be leaving my job. He has relocated from Texas and has not found anything yet, but he is pounding the pavement.

I miss my mom and dad so much. Dad's death heightened my grief for my mom. My husband is very supportive and he came into my life at a time when his support was so needed. I pray I am as supportive of him as he is of me. I try to be.

When my husband woke me up to tell me Dad wasn't breathing, I remember immediately being fully alert. I jumped up and leaned over him to watch for breathing. There was none...just the sound of his oxygen concentrator. I laid my head down on his chest and cried as I said, "Oh Daddy, you made it. You finally made it." I climbed up in bed with him and touched him and kissed him. When Debbie, the Hospice nurse arrived, I helped her bathe him and put pajamas on him. We fixed his hair and put his dentures in. He looked the best I had seen him in months. He was dead but he looked good...crazy as that sounds. The face was free of wrinkles and frown lines that told of his struggle to pull air into his diseased lungs. I sobbed as the funeral home drove away with my Daddy. I knew he would never be in that house again. That house where we moved into when I was 4. That house was not a home anymore. It was just a lot of lumber and bricks.

I know I am rambling. Just wanted to post after many months.

[shell]

AmyLea,

I am so sorry for your loss. He's finally at peace, but it is so hard for the ones left. Your lack of focus at work is perfectly normal and I'm glad to hear you are going to a therapist. We all need all the help we can get at a time like this.

When you said all his wrinkles were gone, I almost cried because that's the way my dad looked. And my mom noticed it too and said he looked so young. It was actually kind of comforting, like he was so fee and peaceful.

Hugs,

Shell

Avsqr_dancer,

I'm so sorry for your loss too, and your dads condition. It is hard to go through grief and care for someone else at the same time. I know since my dad died, my mom has become confused at times and helpless. I am extremely worried about her, but hoping it will pass in time. But grieving for my dad and also worrying about my precious mom is sometimes almost too much to bear. But love makes you bear what you have to, doesn't it?

Hugs to you too,

Shell

Good luck in dealing with your grief to both of you. Hang in there.