Mom is lingering from a variety of health problems that should have killed her by now. Don't mistake me, I love her very much, but she will never have a good quality of life again.

She needs to be home in hospice care but is resisting. She's nowhere near accepting her limitations.

I also take care of my dad who suffered a severe stroke a year and a half ago.

Not surprisingly I am stressed. I have the beginnings of an ulcer, high blood pressure, and heart palpatations not caused by caffeine. Urgent care EKG normal.

Send your good vibes (or whatever you believe in) my way, plus any tips on de-stressing. I see the doctor Monday.

Best wishes for comfort and peace. Is there anyone who can provide respite care?

Dad's good for 2-3 hours on his own so I can take a nap or slip off to Starbucks and journal.

I have been in a similar situation before (though in my case, both of the people who were in the process of dying were aware and accepting of the realities of their situations and were cooperative).

I don't know how they do hospice care in your area (my sense is that the hospice program structure is significantly different in different areas), so my best suggestion is that you ask for recommendations of good hospices in your area from the relevant doctors. If this is not feasible, then call your local senior citizens centers or senior citizen law centers and ask for referrals.

They will know how to deal with your mother's hesitations to accept the realities. This will probably involve you in an awkward conversation with your Mom and possibly a hospice nurse, but the conversation won't last all that long, and at the end of the talking, your Mom will likely be much more accepting.

Once she is registered as a hospice patient, her pre-hospice doctors will no longer treat her...instead, she goes into significant pain-relief care and regular (either daily, or whatever is needed) visits from the hospice nurse(s).

Part of her being a registered hospice patient is the YOU get time off! It's not a great deal of time, but it is enough to eat a decent meal, get a shower, change your clothes, and a nap if you are able to sleep---when I was in this position, all that sudden "normal life" living felt like I had won the lottery or something. (In both cases, it was really rough there for awhile.)

In both cases (with different hospices), the first thing that happened after my aunt, and then my Dad, became registered hospice patients was that (about an hour or two later), the door bell rang, and I was handed a bag with meds in it to make as sure as possible that the patient (in each case) was pain-free from that point on. Both my aunt, and my father, appreciated that very much (and, yes, they DID know that the new medication was going to smooth their individual ways through the process.)

If necessary, and if the relevant doctors are uncooperative (which they may be, because it means that this patient's professional care, as a source of income for the doctor, is being terminated), call hospices on the phone and ask for their advice. Be aware that not all hospices (I have since read) are GOOD hospices, so take their advice if it is applicable, but before you agree to sign-up with any of them, be sure that the relevant doctors are on board. (The relevant doctors have to sign the handover-to-hospice papers, so be aware that probably, one way or another, the doctors have to agree to hospice.)

I feel for you, and I wish you and your parents all the possible best. Being a primary caregiver is often unbelievably tough, and I really know (and remember!) what you are going through.

My hope is that everything works out for everyone's highest and best good for everyone.

Thanks for the wealth of information, Tevai.

Is your mother still competent to making her end of life wishes? Or has she lost that ability and you have become her health care proxy?

It's a tough situation to find yourself in. Try to take care of you first and foremost so your own health doesn't suffer from the weight of caring for your parents.

Take a time out even if it's arranging for someone else to come in and relieve you now and then so you can take a much needed break to do those things that you need to take care of besides your parents.

She can still make her decisions. She's just in a huge state of denial.

You and your mom and dad arebin my thoughts.

Best wishes to you, I know personally how hard it is, and the toll it can take personally.

I know it will be really hard but for your own sake I urge you to get both folks into care. Their denial is understandable but it is not fair to extract such a heavy cost to you so they can continue with the illusion.

Tevai's advice is so right on, and I give you encouragement and sympathy. Take good care of yourself.

This thread pulls up some deep memories and I sympathize with what you are going through. Over the course of 5 years I lost both In-laws, both Parents, and my wife of 34 years. As stated by others here, Hospice was very nice and helpful to us. I wouldn't hesitate for a minute to call them again.

Tevai has spelled it out pretty accurate for how it all worked for us as well. Most recently, my Father was alert enough to know what was happening and resisted, but once he learned and accepted the fact that he needed more care, life became better for everyone involved. It's hard to watch a person in decline, all the time knowing that an end is approaching. My thoughts are with you, , ,

I took care of my mom in her decline, so I know what you are going through. I think the secret of staying sane is getting respite care at regular intervals. For me it was a weekend about every six weeks, when mom went to my brother's house. He basically told her that was how it was going to be, and it gave me a much-needed break.

My understanding of Hospice is that the person in question needs to be within a certain time range of expected death. A home health care aide or a respite home are other options.

the doctor has to state that the person is likely to die within six months in order to enter a hospice.

There are in-home hospice programs,and in-facility hospice programs.

My best friend's mother was certified for hospice care when she was dying of colon cancer. She wanted to do into a facility for care, but her super-selfish husband (he was truly a despicable man; his poor wife deserved much better. She was a sweet lady.) He insisted that she remain at home.

He would not read the material that the hospice visiting nurse gave him. He withheld the pain meds during the day, to be sure that she slept through the night without bothering him.

My best friend, herself limited by MS at that time, did her best to visit her mom every other day. She created a little "tea ceremony" for her mom and herself. (Mom was only allowed clear liquids by that time.) My friend made up different flavors of tea, served it on lovely china with doilies under the cups, no less, and they shared memories of their family life as they sipped their tea.

When Mom was no longer able to remain at home, my best friend saw to it that she was admitted to a nice hospice facility, (he father was pissed off at the loss of control, but she overruled him with the full support the the doctor.) Her husband (the family called him "Mr. Selfish,") would not visit his wife at the care facility. Her daughter was with her when she died.

Hospice care, BTW, is covered under Part A of Medicare.

Oh the state of health decline can go on for months. I remember a family member who was in hospice care and we figured weeks. 8 months later, still fighting the good fight.

The human body can take a great deal.

Yes, take care of yourself and good luck at your appointment. You really need to practice some relaxation techniques. Google is a good start.

I returned to my hometown in 2012 to manage my elderly mother's affairs. My sister told me Mom was dying soon. Mom is still living and although I can see she is ever so slowly getting weaker, she is still mentally strong and able to make her own decisions. She has no terminal illnesses other than aging. Thankfully she is not in denial of her situation.

This has sure turned my life plans on their ear. I love my Mom and love having this time with her but it puts most of my life plans on hold for the time being.

Good luck. I know from where you are coming.

Catholic charities have respite care workers and I think but am not sure that since and ssdi in third Medicare also pay for these. 1 day off a week really helps when you are taking care of disabled parents. In Canada, their social workers sit down with you and tell you all the things you need if you are doing home care. They also provide nursing home care in real homes. Canada is so great! We just had Thanksgiving and health care was one of the things we were grateful for.

I think something hard about your situation could be wondering if you are doing enough. Your heart seems golden to me. Admit you are doing your best. Stand back and watch yourself as you help. You'll see. You are loving, tender, worthy. But hurting too. This situation can't be fixed. Only experienced.

Long ago I learned a way to monitor stress. Try something. Every hour sit somewhere quiet. Close your eyes and concentrate on your stomach/abdominal muscles. They will be tight. Spend a few minutes blocking everything out except the focus on relaxing that area. After a while you will tighten up less and less. For some inexplicable reason you will find perspective. More peace.

Brotherly hugs

teddy

Whew. Just when I thought I was losing it. I saw the doctor today and the heart palpitations are definitely thyroid. I was put on some blood pressure medication. Now I can get some serious sleep.

I am glad for you.

Very seriously...Sweet Dreams!!

:)

I saw your topic a couple of Days ago, but was too scared to read it as I lost my mom the same way a couple of months ago and still am not over it.I really feel for you and your situation. Do you have anyone else who can take turns staying with her and your father? The last few months before she died, she was in and out of the hospital. They said her body was slowly shutting down.
She had live in care( my dad passed overnight a few years ago)
The time finally came when they recommended hospice and that's when I finally broke down and knew that this was it.
Before she was up and down. She had her choice to stay home with hospice or ho to a hospice in a assisted living type thing.
We choice home at first, so she could be in familiar surroundings. She had 2 pain meds and another one, can't remember. She was in a lot of pain, on a respirator, and they said she only had hours or that day. She kept staring at me , the nurse she had, would NOT give her the pain meds too close together.
Finally my husband asked if we could switch over to the hospice home. She lived almost another week there, able to communicate more. She also was pain free. None of my sisters would visit.
They never wanted to do anything for my parents when they were both alive and young.
I loved both my parents and were close to them, so it was hard to see them being treated this way. My parents did everything for us growing up; my sisters were all spoiled and this was how they repayed my parents, which made it even worse.
They also have something called palliative care.
I don't really know the difference. As someone said, Medicare pays for hospice. I know how tired and worn out you must feel.
Is there a caregivers support group for you to attend?
Hospitals should have info, there's always google too.
I'm glad you found the cause of your chest pains. You have to take care of yourself. Tevai gave a lot of info too, so I don't have to repeat. We'll all be keeping you and your parents in our thoughts and send healing energies your way.
Hope you're getting some anti anxiety meds too if they help