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Thank you so much for all your kind thoughts and prayers. Your words have helped me in so many ways. I think you are right that Dad perhaps chose Christmas day. He knew how much my mom loved Christmas Day with her children and grandchildren, and wanted to be with her. At least that thought does give me comfort.
Dad was buried yesterday next to mom on a cold, blustery, sunny day. He was sent with military honors, and the graveside service was beautiful. I’ve witnessed the service with the gun salute, taps, and flag folding, but to actually receive the flag “on behalf of the President of the United States” was such a humbling and emotional experience I’ll never forget. His friends and family were all around to support us over the last couple of days, and it was comforting to know he was loved by so many. I provided the funeral director with photos of dad from long ago until his 85th birthday in July, and the result was a beautiful video of his life. It was so moving, and will be a wonderful keepsake.
For me, now, I am feeling so many things: relief that he suffers no more, a little bit of guilt because I don’t have to make difficult medical decisions any longer or see him waste away in the nursing home, sadness that he both my parents are gone, but mostly a kind of emptiness. The last five years, especially the last 12 months, have been consumed with nothing but his care. I am sure I will find plenty of things to do to replace the time, getting his affairs in order, for instance, but I just feel like it will be a huge adjustment getting some of my life back.
My prayers and thoughts are with you during these trying times. When I posted my first message regarding my dad’s CC a couple of months ago on these boards, you were the first person who responded, and I knew from that moment I came to the right place. Your positive attitude, fighting spirit, and wealth of knowledge are an inspiration to all. My best to you and your family during this season of Thanksgiving.
Thanks for checking back with us. It really helps us to know what you are going through, just as it is an opportunity for you to vent. Joe is so lucky to have his loving family around him. Not only do you support each other, it sounds like you are keeping busy to help the time pass meaningfully.
My heart aches for you. We are in a similar situation with my Dad, so I have all the same questions. Though I don’t believe we are at the same point – Dad still eats well and has no pain. However, he is very weak, shaky, short of breath most of the time, and mentally confused. Though his doctor sent him to the nursing home with “weeks” to live, predicting fluid would collect again, it has turned into a slow and gradual decline without any swelling so far. So far, he’s in no pain, but it’s difficult watching him get weaker and weaker, not really knowing when the end might be.
So I’m glad you brought up this question. It helps to know what others have experienced.
I know a little of what you and Joe are going through. My dad entered hospice care in a nursing home a few weeks ago, and I can only imagine how stressful it must be as the caretaker in your home. You are right when you say things are calmer without the running back and forth to appointments, tests and treatments. Although my dad is very sick, he seemed much more ill and agitated when he was treating, especially the chemo which sucked the life out of him. You and Joe are blessed to have a lot of support around you to get you through this, and the hospice care workers are so very helpful and caring.
Please make a point to take some time for yourself – no easy task, I know. Lord knows, you deserve it.
You’ve found the right place to share, any time.
Darla and Marions –
Thank you both so much for validating my feelings. You and the others on these boards have been so great just listening. I don’t think there’s anyone else that I meet in my daily travels that really “gets it”. It’s so good to just have people nearby to just listen. I honestly am happy that he’s pain free and eating well (yes, the food is better than anything he was able to find at home on his own). So far, the cancer’s progression is far less awful than was predicted to me, and not what I expected at all. So it just goes to show that no one can predict the future.
I will continue to take one day at a time.
Just thought I’d add an update on Dad’s hospice care –
Things have been status quo. The fluid buildup that we anticipated when he left the hospital weeks ago hasn’t materialized. However, he has gradually weakened to the point of having to need help feeding him his meals, has tremors in both hands, and can’t speak more than above a whisper. On the positive side, he still remains pain-free. He eats his meals while in his wheelchair in the company of his friends in the dining room. His mental status is still being helped by the Xanax twice a day, to prevent anxiety. I visit with him daily at lunch to help with feeding, and my brother comes and helps at dinner. His appetite has been great, and he’s never eaten better. The hospice nurse comes by the nursing center twice a week, as well as a CNA. The weather has been great, so we can even get outside for some fresh air. Most of the times he gets his afternoon nap. If not, my brother will catch him with his head in his plate at dinner!
On a more sensitive topic, the worst and most humiliating experience for him now is toileting. He can no longer make the trip to the bathroom with or without assistance. He has the urinary catheter, and has to rely on adult diapers for the rest. He sometimes gets confused and will ask for help to go to the bathroom, forgetting that he is unable. Of course, as with any nursing home I’ve visited, patients sometimes have to wait their turns for assistance, and it’s depressing to see him having to wait for someone to change him.
When he left the hospital about 2 months ago, the doctors said he had “weeks” to live, so needless to say, we are amazed and happy he’s still with us. On the other hand, because he’s still with us, I can’t help wondering if we made the right decision about ending treatments for a “quality of life” approach. Is sitting in a dirty “diaper” quality living? I also wonder about all the chemo he had. He’s definitely weaker than ever, but since stopping chemo he’s had no further fluid building up in his legs or around the lungs like he had in the hospital. I am truly glad he’s not experiencing the symptoms he had with chemo, but I’m feeling confused as to why doctors use the terms “weeks” or “months” when they really don’t know how long someone will live. I could drive myself crazy with all the second guessing. I have to confess that I’m feeling a little guilty because expectations were that we only had a short time left, but is still cruising along very well, the selfish side of me wants to know how long he’s going to go on this way or, I should say, how long do we have to see him like this? What does the future hold for him? So many questions, with no obvious answers, of course.
I apologize if that last paragraph made no sense. I’m not making much sense out of anything these days.
I was so sorry to hear of your aunt’s passing. It was fortunate that she had the benefit of her 2 close friends by her side daily and also the love of family and friends far away.
Thank you for sharing, and God bless!
Hi Barb –
My 85-year-young dad was diagnosed at age 80. After surgery, stents and radiation, he recovered to a full life again, until December of last year, when the cancer returned with a vengeance. Actually, he went quite a length of time with no tests or scans in between, so it was likely the cancer was brewing earlier than last December. Just like your dad, mine has always been very active and youthful looking for his age. It’s been painful seeing this awful cancer spread and weaken him. We have exhausted all treatment options, and now he is in hospice care.
I agree that second and third opinions are always a good idea, and keep asking questions until you get the answers you are looking for.
You’ve come to the right place for support. Everyone is very supportive and helpful. I, too, am juggling family, work, and visits with dad and coordinating his care. It hasn’t been easy, and sometimes a good cry on a supportive shoulder is all I need. If you can, try to enlist the help of family and friends to maybe help with the kids or chores around the house. Also, don’t be afraid to ask for help from professionals. The social workers at the nursing facility and from hospice have been of tremendous help and support to me over the last few weeks. It’s exhausting, but with the right resources, it’s a little easier.
Good luck and come here and talk when you need to.
Hi Darla –
You are right – I do need to take care of myself, which has been difficult. It seems there just aren’t enough hours in the day, with dad, work and my family eating up all my time. I used to walk or bike, but by the time I get home at night I’m exhausted. I postponed my annual checkup a month today because I’ve put on weight and feel so bad about myself. I really do need to spend a few minutes on the bike in the morning because it does give me a boost to get through the day. I just have to motivate myself.
Enough about me, how are you coping? Being fairly new to this board, I read some of your background and experience with your husband’s illness and then his passing. I can only imagine what a horrid seven months it was for all of you, and I pray that you are doing well and have the support of friends and family to see you through the hard times.
Darla, thank you for your words of encouragement. This site has been so helpful to me.
As an update, I spoke with his case manager today. She met with him and it was decided to start dad on a very small dose of Xanax for his anxiety and depression. I have always been hesitant about these sorts of drugs, but when I saw Dad today at my usual lunchtime visit, there was a remarkable improvement in his mental status. He was more alert, less anxious and even smiled at times. He was tired after lunch, of course, and after a few minutes of “The Beverly Hillbillies” on the rec room big screen TV, he was ready for his afternoon nap. I’m happy to say that the nursing home has worked a nap into his daily routine, and his hospice case worker also agreed it’s important to stick to a routine, especially what he was used to at home.
One of his brothers stopped by as he got into bed. Unfortunately, it was a short visit as Dad drifted off to sleep. So I encouraged my uncle to visit earlier when he was still wide awake and better company.
He has been moved to a room closer to the nurse’s station, and the room is both brighter, and a tad bigger, and he has plenty of room for all his stuff.
Considering everything, it was a good day.
I can only imagine how it must be to be so far away from a loved one who is dealing with such a terrible illness. My dad is in the same situation in hospice comfort care. Fortunately, someone from the family visits on a daily basis, but it made me wonder what we would do if no one was there for him nearby.
Perhaps you could speak to the social worker at the facility to find out the best way to monitor his care. Perhaps the social worker or another designated staff member could be in phone contact daily to go over any concerns about care. Also, perhaps a trusted friend who visits your aunt on a frequent basis would be an advocate for her and report back to you with any concerns. This way you would have a good idea of the care she is getting without having to travel until you need to.
You don’t mention it, and forgive me for asking, but does your aunt have someone named as her power of attorney to make her health care decisions when she cannot? I assume she has some sort of directive in place since she has entered the hospice program. If not, it might be a good idea to have someone named to be sure her wishes are carried out.
Let us know how she and you are doing.
Thanks for all your experiences and opinions.
Daddysgirl, I feel for you and your horrid experience with nursing home care. I have heard other nightmarish stories similar to yours, and fortunately most of the really bad facilities have been closed down.
As far as tests to see why he is falling, yes, we could have more tests done, but we’ve made the decision to begin the hospice program, and feel that he has been poked and prodded enough. He began falling on occasion at home months ago, and this has gotten worse as the cancer has progressed. The cancer has invaded his organs, his platelets are low, chems are out of whack, and we are definitely beyond any PT to be of any use.
Federal regs do not allow restraints including rails on the beds. He has a sensor alarm, but as disoriented as he is, he somehow manages to remove it. He was moved yesterday to a room nearer the nurse’s station. I know it sounds unbelievable, but other than this issue of falling, this nursing home is the best of any I have experienced, and between my parents and my inlaws, I’ve experienced many. I sincerely believe that if they can protect him, this facility is a good match. I do not want to move Dad again, unless it is to the hospice inpatient center during his final days. I met with the nursing supervisor and the hospice nurse yesterday, and they have assured me they will do all they can to give him the attention that he needs to keep him safe. God, I hope so.October 11, 2008 at 5:25 pm in reply to: Dad now under hospice care- a chronology of what we experience #23141
I am so very sorry for your loss. Your experience through this incredibly hard time has been of tremendous help for those of us who have loved ones headed down the same path – with and without hospice care. My dad just began hospice care at his nursing facility, and I thank you for sharing your experiences and helping us know what to expect.
My thoughts and prayers are with you and your loved ones.
CS – Please accept a great big hug from me. I know exactly what you are going through, as my 85 YO dad is in exactly the same situation.
You don’t mention insurance coverage, but I would begin there, with the help of a social worker, if necessary, to find out what your options are for her 24-hour care. I know exactly what you mean – it is so difficult for you and your loved one when living at home is no longer an option.
My dad was fairly mobile with cane and walker while at home, until he began falling due to fluid and lack of strength. Almost a month ago he developed pneumonia and landed in the hospital. A week later, they transferred him to a nursing/rehab facility in the hopes he would recover and gain strength. A week after that, he landed once again in the hospital because the nursing center felt he needed more care. After 3 blood transfusions, antibiotics, and attempts to drain more fluid, he is no stronger, to weak to lift himself up, can barely feed himself, and is totally bedridden. He cannot go home because he lives alone during the day while my brother works. He requires 24-hour supervision, so the decision has been made to place him in a nursing facility. I fear this will be his last stop, and he will receive hospice care either there or be transfered to a hospice facility. After long talks with doctors and social workers, dad has come to the realization that he will probably never go home. He is sad about it, but I think he has come to terms.
Do you have a clergy member, social worker, or some other caring, supportive person who could speak to you and your mom in an attempt to help her understand that everyone loves her and is doing the best they can to make her feel comfortable and cared for, even though it’s not home?
I have been agonizing over these same decisions and it’s been consuming me 24 hours a day, while I also try to balance my family and my job. I spent the last 2 days searching for a nursing center that I felt would be a good fit for my dad, which probably will be his last transfer. With every decision I make, I always wonder if it was the right one.
With supportive family, friends, and health care workers (and this wonderful forum), you will get through this, as I know I will.
My thoughts are with you.