I just don't know what to do anymore. Dad's COPD is getting worse. It's to the point that even the smallest activities leave him breathless. I don't think he fully comprehends what's going on due to his dementia, so each breathing episode brings on confusion which brings on panic which makes breathing even harder.
For the past couple of days, he's been "wound up". The Seroquel that the psychiatrist prescribed isn't really helping, and Dad gets combative if he feels like the ALF staff is giving him extra pills. He connects the Seroquel to sleeping, so he calls them sleeping pills.
When I visit, the ALF staff tells me he's been increasingly anxious and not sleeping well. I've personally witnessed him in this state and its SO sad. I just got a call from his Adult Day Center and they are stating the same thing as the ALF staff.
Since that call, I can't focus at work. Should I take him to the ER (another trip I can't afford)? Will this pass? What else can I do...
Then the ultimate, not-so-nice inner question: How much longer does he have to endure this? I can't imagine what it feels like to not be able to breathe on a regular basis. ANYONE would panic if they can't breathe. WHY IS HE SUFFERING?
I just want to go home and get under the covers and not come out...
I wonder if you father needs a higher level of care at this point. Would a nursing home be more equipped to meet his needs?
Sometimes I wish (this is bad) that he would just peacefully sleep away. I HATE to see him suffer, and I will selfishly admit that that wish comes at a slight benefit to me.
I'm tired of being on edge all the time... constantly worrying about when I'm going to get "the call". Trying to figure out when to take action and balance whatever I'll have to give up in honor of Dad's needs.
My life is pretty much a cycle of negative emotions, and this is with me cutting back my involvement which was OK a few months ago, but as his condition gets worse, I feel forced right back into that negative place.
I LOVE my job, but can't truly focus on it. I have NO HELP! I want to completely break down right now and there's no shoulder. I'm just having a bad day.
The ups and downs, along with having a mini breakdown every time the phone rang lead me to seek out a hospice evaluation. I honestly didn't know how it would go - one way or another - but I figured with them being the experts, they could give me some answers and reasonable expectations. And they did. It was so very helpful - getting them involved.
Think about asking for a hospice referral. Not necessarily to put you dad on hospice - and they don't just take patients on family say so, a criteria must be met - but perhaps they can give you some answers - some reassurance and some expectations.
Take care of yourself - this is a tough time, for sure.
I know it is really hard to be in this role. You feel like the weight of the world is on your shoulders for every decision. Have you talked to his physician about what to expect? I think things might be changing a little but when we went through this with my grandma 10 years ago, we would ask very blunt questions but would very often get very vague, non-committal answers from the doctors. I know they have to be that way to a degree but it really leaves family caregivers in a bad position.
In my grandma's situation, the demand on her heart and lungs started affecting other organs. In our situation, that is the point at which she should have been put on hospice for sure because the additional medical interventions prolonged her life for a very short time but also increased her pain. Having now been there for both of my grandparents' decline, the presence of hospice meant the exact opposite for my grandpa. His passing was peaceful and the ladies from the organization were very good communicators and provided him with comfort measures that the nursing home staff were not able to order on their own. It decreased the pressure for the staff and for our family, and just talking with the chaplain provided a huge comfort.
I am sorry -- I feel so bad for you and I don't know if it's wrong to write this. I just know in our situation, we felt like if we just kept trying, we would reach a perfect equilibrium and grandma would be ok, but that just did not happen. I really enjoy your posts -- your dad sounds like a character (even though I know your relationship with him is complicated) -- and I feel for you.
I am very sorry that the nursing homes you have visited have been depressing. The one my Grandmother was in, 45 years ago was pretty dismal. But the ones my three aunts have been in, and the one we placed my mother in were very satisfactory. They were kept clean, the buildings were maintained well, they did seasonal decorations, all the aunts and Mom liked the food. Meals and snacks were at a scheduled time and a predictable routine was in place, but individuals could choose to participate or not.
But above all, all these dear ladies got the medical care they needed, promptly.
Would I want to live in any of these places? Of course not. I'm healthy and independent. But if the time comes where I need that level of care, I just hope my family can find a pleasant one for me. (I have already notified that if anyone puts me in a place with loud television sounds streaming out of every door I will come back and haunt them!)
I hope you can overcome your feelings of guilt if the situation arises where there is no choice. The AL may at some point come to the decision that an NH is needed. If that happens, I hope you can find a pleasant place, and accept that you are acting for the best.
I will also consider another visit to the ER if he continues to feel badly. It's bad to say this, but EVERY ER visit affects my job(s), so I try to keep them at bay. Sitting there for hours just for them to send Dad home is hard, especially since time away from work means yet another bill I won't be able to pay (mostly his stuff).
As for talking to his physician, that's no help. His Pulmonologist just gave me the "keep him comfortable" speech last year when he put Dad on oxygen. All he said was that Dad has some type of visible growth on his lungs which is most likely a tumor from all of the years of smoking. He thinks that it is futile to even take a closer look due to Dad's age and other conditions, so we don't know if it IS a tumor, and if so, if it's benign or malignant.
The doctor basically said that Dad's current treatment regimen (inhalers, oxygen, etc.) are to prevent inflammation of the lung tissue which will impair Dad's breathing even more. From what we can gather, Dad's lungs are only functioning at about 15%. So, it's a waiting game.
The doctor ended this dismal diagnosis by recommending a DNR order because CPR would probably crack Dad's ribs (he barely weighs 130 at over 6 feet tall). He can't give me a time frame of when the inevitable will happen, nor does he seem to care. Instead, he thinks it's better for me to watch Dad rot away breath by breath. It's miserable for both of us.
I've been at work for two hours and have gotten nothing done. Yet another missed deadline. I don't know how much more of this I can take.
We had a hard time asking for the hospice evaluation -- we knew things were getting worse but felt like we are giving up if we said so to the doctor before he said it to us. But it ended up being a huge relief.
When we first called the group we decided on, the office lady was not rude but was a little no-nonsense, which when you are already depressed and guilt-ridden can make you feel worse. But they lady who came out to sign him up and the rest of the staff we encountered ended up being really nice and on-the-ball. The hospice lady told us that the hospitals in our area are now pushing hospice for all their 85+ patients before they release them. (Has to do with how statistics are kept.) Just in case you do take your dad to the hospital and they are pushing it, do not feel like you have to accept their hospice group. When my mom took my grandpa last winter, they were doing that and she just didn't get a good feel for them. When he was released, we called a few places and ended up going with the group his nursing home social worker said they were the most familiar with. It worked out well because aside from having a great staff, they would stop by my grandpa's room even when he wasn't scheduled for that day if they came to see another patient.
I hope you get a break this weekend. And that if you do decide to ask for the evaluation that you will find a group who is a support to you.
Yes, it's SO hard to work two jobs and deal with all of this... part of the reason why I decided not to have children. I'll be 40 this year and after experiencing the stress of having an 86-year-old father at my age, I couldn't imagine putting this on another human being. Not trying to be rude... it's just reality for me.
My stress level is starting to show at my full time job. Anytime I see a missed call from the ALF and can't get reach anyone, I'm in knots. It just happened this morning, and I am literally shaking as I type this.
My job (which I love) involves lots of creative energy which can easily be thrown off with a call about Dad having another panic attack or not being able to breathe or not being able to poop or refusing to turn on his A/C.
Would it be rude to ask them to text me or just call me with REAL emergencies? I'm starting to fall apart!