My dad has been really healthy until about a month ago, when he fell. A trip to the hospital revealed a broken hip from the fall....and a whole lot of stage 4 cancer. He was just released to hospice yesterday and I am the primary caretaker. I still have kids and a husband at home, but for now I am staying with him at his home 1/2 hour away from my own. My dad and I get along but today I had to clean up his first bowel movement. It was everywhere, and the smell was overwhelming. I felt nauseous for about 2 hours after. He's also completely sound of mind and I know this is very embarrassing for him. I feel like a weakling--I know many of you have been doing this for years and I probably sound so silly, but does this get easier? Any advice? Thank you in advance.
My husband used to be extremely private. When he got sick, it was a shock for both of us to be in these new roles. What helped me was watching a friend (who I called to help get him up after he fell in the shower). Our friend was so professional and nonchalant about the intimacy of the situation- covered him properly with a towel keeping respect at all times, spoke out loud what he was going to do (without too much detail, of course), addressed him with a title of respect and provided encouragement throughout. It was actually kind of beautiful, and I learned so much from observing that day.
Also, I learned how to change him in bed from the nurses at the hospital. Knowing the technique has really helped! Also finding out about disposable pads and other useful gear has helped.
In in many ways, it has gotten easier. But things are always changing, so there are new challenges.
Tip: consider buying a bidet for the toilet so he can clean himself without reaching around. It helps as long as he can still use the toilet.
My mom's a fall risk and I've had to stay home. Sometimes I feel I'm trapped and can't get out, but I have a strong and supportive sister and can text her all the time for help.
What my sister said was for me to take a handle on my stress before I spiral down. I take care of my mom and we get into arguments. Yet, my sister said to nip the arguments on the bud. I have to accept that my heart is racing and my mind is going crazy and I have to tell myself to shove it and wait for my stress level to go down. Sometimes I wait 10 minutes, maybe 15. I have to give myself a break and say, "I've done enough for now. It's time for me to rest." Make your mind and heart at ease.
I'm not perfect. It's not a fool-proof plan. I'm not a super hero. I have to listen to my body and if it says, "I'm too tired for this.", than accept it.
I have a part-time caregiver that helps. Caregivers are expensive, but they offer a lot of advice and experience so they can teach you what to do and give yourself a break.
I hoped I helped.
For myself, when it was my dad, he wanted to die at home, so we had him at my house. That way I could take care of my kids and still help him. My family's routine was disturbed as little as possible. This was in 1974 before Hospice. It worked out well for me. I did have my mother to watch him at night and then she slept in the day and I took over. Some people didn't think my 10 and 8 years old girls should see it. I asked them if they would feel better if Grandpa was in the hospital. They both said, "no, because they couldn't see him". They were close to Grandpa and when he was dying they would sit and do homework with him and watch TV. It was a natural, circle of life for us. When he had hallucinations from the morphine, I just explained Grandpa was having a nightmare and he couldn't wake up from it. I realize we are a different sort of family, we believe this life is not all there is, and we all were calm about it. My telling you about this is for you to think about moving him to your house or your family coming to live with him.
Since then I have had lots of deaths of family and friends. I think it would be great to make full use of Hospice. You can shop around if the first company doesn't meet your needs. Perhaps you can hire a caregiver to be with him at night while you sleep.
It was my second time going through this and since then I have learned a lot. My heart and thoughts are with you. If I can help you please let me know. ((Hugs)) to all of you.
And Tricia: I wish you all of God's blessings. I'd like to say it does get easier, but I've found out in the last several months that would not be the truth. Now just reaching out as you have at this forum is a true sign of strength. Never forget that. Hugs and all my best.
I agree with others that this will not get easier. You might get more used to it and if you have a proper amount of help, you might find it tolerable. But you need LOTS of help. Don't be a hero. Don't feel guilty. You're only human and have normal limitations.
If Dad can afford it, get help for the times an aide isn't there.
You must remember, as difficult a time as this is for your dad, it is difficult for you too. you are a person too and you matter. Your feelings matter. Your needs matter. It is all too easy for caregivers to put the needs of everyone else before their own, to give up their own lives so their loved ones can remain at home and keep their same lifestyle. It’s often a recipe for disaster and leads to burnout and even death. It’s said that 40% of caregivers die before the person they are taking care of! So.....please don’t forget about your needs & try to get him some caregivers.
May God give you the guidance & strength that's needed right now to see your dear dad through to his next phase of eternal life.
All the best of luck.
You are certainly no weakling. You are there for him. If you weren’t strong, you wouldn’t be.
The course of my LO’s care was7 weeks. If you are able, focus on researching comfort care and doing what your dad wants done.
If he has a preference as to in home or residential services, I think the decision is his to make.
My own feeling is that children and teens should also be allowed to vent, visit, and/or FaceTime as they and your dad wish.
Everyone may feel somewhat better if you’re able to develop some sort of routine to balance your time between your dad’s home and yours.
Don’t let yourself forget about caring for yourself and your other dear ones.
if your Dad is in hospice care, you can have that at home or in a hospice facility. If you meet with the hospice nurse you can get a plan of care and ask for the maximum amount of help. Respite help, volunteers, cna visits, nurse visits, etc. if this won’t work for you, a facility near you might be a better choice.
How does dad feel about this being so hard on you and your family because you are not where you should be?
1) are you his medical Durable Power of Attorney? If not, who is? It is very important that someone trustworthy, responsible and local has this. Also financial PoA. He needs a Healthcare Directive, and also authorize you on his HIPAA release so his doctors can release and discuss his info with you.
2) Do you have any local relatives who can help you? Does your dad have any neighbors, friends, church that can be engaged until you get a handle on things?
3) Do you know what his financial means are? If good, you can seek in-home care services to do what you are willing to give up (and try to get a guy, for your dad's sake).
4) If finances not good you can contact social services to have him assessed and they can offer some in-home services.
Wishing you peace on this journey.