Overwhelmed by everything.

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My dad is almost 93 and being sent home from hospital / rehab NH for hospice care. My brother and I have put our own lives on hold for 14 years to care for him. We're sad, scared and middle aged - me 62, him 60.

I've run the gamut of emotions from resentment and then guilt and am an emotional wreck, I'm exhausted from the last 14 years, 8 of which he's not been mobile and it seems his Alzheimer's is in the last stages.

Yesterday we used a few hours before he's being brought home to make his funeral arrangements and I'm so overwhelmed with that and fear from what is coming that I'm constantly angry, sad and in tears.

I love my dad so much and can't imagine someone who was always there for me would end up as he has and what will I do when I no longer am taking care of him 24/7.

There have been serious financial repercussions for my brother and I having to quit jobs or take early retirement that we wonder if we'll be left living in poverty when he passes.

I have so much to do and take care of that I'm unable to sleep and feel if I sit down I'll never be able to get up again.

I'm scared, angry and sad that my sweet daddy is a former shell of himself - someone who survived as a POW for 2 years in WW2, and I alternate between being unable to bear that he'll be leaving us soon and wishing that he'll mercifully go soon and peacefully to stop his physical and mental limitations.

When I was a little girl he would call me Madame Butterfly and still did until the dementia took over.

I am isolated with no friends because I've spent 14 years taking care of him so I'm glad to find this site and know I'm not as alone as I feel.

5 Comments

Why would you bring him home? Why, at this point, are plans not being made to keep him in a long term care facility with three shifts of caregivers?

How much help do you have coming in to help with his care?
Do you or your brother have family other than your father, Madamebutterfly? I am having a hard time figuring out how it came to be like this for you. It is like your father was so important that you and your brother threw yourselves on the flames for him. He must have been a remarkable man for you to have sacrificed your lives for him.

I know it is late now, but if I were to give you honest advice I would say to stop dwelling on your father's death and pick up the shards of your own life. I know your father will be okay when he crosses over. I worry more about you. The future for you and your brother does not look so bright from what you wrote.
Wow. I saw I am feeling totally overwhelmed, and boy can I relate to that. I see very positive things ahead for you. I actually just read an article emailed from aging care about the importance of touch. From my experience, washing my Mom's hair , blow - drying, brushing or styling it have been at times some of the only
things that seemed to bring her comfort. Touch your Dad's hair like he is a little toddler and you are styling it. See how he responds. Pick up his hand and give it a kiss. Kiss his cheek. Every day you talk to him say "Dad, it's (your name) or you can call me Madame Butterfly. Playing music your father really loves can be very soothing. Pets can be a wonderful comfort for him and you. As far as your future, the sky's the limit. You can actually think about what you enjoy doing and plan to do it.
Ask yourself what you would do if you were 40? Do that . Finding a caregiver support group would be good for you to make some connections. Find a way to be around others based on your interests. At churches or bible studies, you can usually find people who would welcome the chance to encourage you. Share that you have been so busy with your Dad that you don't have any connections. Ask if maybe you could could get some phone numbers of people who wouldn't mind if you called them for ten minutes once a week for encouragement. Ask them when is a good time for you to call them once a week. Do what you are doing here and go on websites and find support. Get a book called " the Feeling Good Handbook" by David Burns And read it and do the simple question excercises. This is probably the most important. It will teach you how to start changing your thoughts which can quickly produce more happiness for you which equals more people who will want to be around you and more people you can encourage. Being the encourager to others is where the true happiness comes in. Rekindle lost connections - write a note and tell someone you were thinking about them and a fun time you had together. Have someone help you set up a Facebook account if you don't already have one. You can do it with a Kindle tablet. You have to have wi-fi to use it, so if you don't have wi- fi at home , you can go sit in a comfy chair at Barnes and Noble and send messages, look at photos and many other things. Let people know who might want to come visit him. Set up his bed in the living room near the front door . Ask hospice for advice! Have they seen people who handle these situations with grace and poise and somehow avoid falling into a depression? Ask what they see these people doing to help them cope? Tell them you would appreciate any advice. Be friendly to the hospice workers. Ask them about their lives. Be a blessing in their day. Tell them how much you appreciate them. Pray. People have been doing it for a long time. They wouldn't keep doing it if it didn't work.
Ask God to guide you towards the right actions for you to take or just a simple "help" I don't know what to do. Make a list of things to be thankful for every day.
Butterfly, let's look at this from a different perspective. You and your brother have apparently provided a lot of care over a several year period. You've helped your father during this perhaps roughest but definitely the last phase of his life. Think of yourself as lifeguards, helping him swim this last journey he'll take. You've been with him all the way, guiding him through calm and rough waters. He's close to his destination now, and the support of you and your brother got him there in a condition that he wouldn't have achieved without either of you. Be proud of that.

Since his destination is apparently close at hand, your responsibilities will soon be over. No question but that you will miss him; that's understandable. But try to focus on where you've taken him, through probably pain, confusion, anxiety, perhaps depression, and helped to guide him to the point that he can pass with memories of how much his children loved and cared for him. Not everyone can reach that level of peace with their children.

You've brought him to where he needs to be; that's an important and major commitment and accomplishment. Please try to think positively of all you've done for him, and how lonely and difficult his life would have been without you.

Give yourself credit for what you've done; be proud of it. There's no question that you'll miss him, but say your goodbyes now so that you don't later regret now having shared those with him while he's still able to understand them.

After he passes, yes, of course you'll mourn. That's natural and understandable, but we all face that and try to focus on the better parts of life rather than the less positive end stages.

After he's gone, you'll still be helping him by settling his estate; that's a critical aspect as well.

And since you have a butterfly moniker, think of yourself as being in the chrysalis stage now, eventually metamorphosing from the caregiving cocoon into your own person again and then moving forward with your life, with the positive memories of how much you shared with and did for your father.

But make these last days count for each of you, and cherish the time you've had with him. I know this is easier said than done, but try to wake up each morning and think about how you'll enjoy the day with him, regardless of what else happens.
Great Comments, Garden and Jen. Butterfly, It is very painful to see our dads like this. I understand and wish you comfort. I love the Burns book. I going to go find mine and reread it.

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