Dad wants me there daily; how can I be there for him without sacrificing my entire existence?

I'm so sorry for your loss, Holland.

HollandGirl, I am so sorry that you have lost your dad.
You have been an amazing daughter to him. I’m so happy you were able to see him and he you through the window.
Take good care and do come back and let us help if we can at all with MIL.
Peaceful Days and Warm Regards

HollandGirl, I too offer sympathy for the loss of your father. This journey has really been challenging for you and your family, hasn't it?

I am glad though that your father and his wife were able to return here so that the family could be united before and during the stressful times, and have the benefit of the support and comfort a family can offer.

Peace be with you and your family, and may all of you be safe during the pandemic.

My sincere sympathy Hollandgirl. You & your Dad have gone through a lot since you started this thread & I imagine the shock is still very raw. When I read about the necrosis, I wondered about the quality of life he would
have. He is at peace now & saved from further illness. Hopefully in time the good memories will be there for you. Peace to you too.

My deepest sympathies. It sounds like your dad's journey ended peacefully. I hope under these current circumstances you can say goodbye appropriately to your dad. You know he had good care and that is what is important. Look after yourself and your family now. (((((hugs)))))

You and your family have my deepest sympathies, Hollandgirl. May your dad's memory be a blessing to you.

4/29 update:
😥 dad passed away last night. The nurse went in to give him his next pain medication and he was gone. He had been very painful with his hands and feet so they added a fentinol patch in addition to his other meds. I’m hoping he just slipped away peacefully- they said the patch would make him quite sleepy. We got to see him through the window the day before and he clearly said he loved us.
it breaks my heart that he had such a crappy month but at least for most of it he was unaware it was happening.
thank you all you your input over the past several months and especially GardenArtist for all the extra support.
thank you.♥️

Bump.

HollandGirl, this really has been a rough year for you, hasn't it?

First, I don't know if necrosis of the extremities can be reversed. And I'm assuming that's factored into the hospice discussion. I'm surprised he survived the sepsis; that can be a terminal factor for elderly.

Second, assuming that you're in agreement that hospice is necessary, it seems the issue is whether or not the NH will release him to home care. Is that correct?

Do you have a hospice company with which you're satisfied, and are you comfortable with the challenges you'll face providing home care for someone who's apparently unable to move much?

I had considered trying that for my father, but in retrospect, I think I would either have had a physical or mental breakdown after seeing the care that was required. Another factor I found incredibly important was the support of a caring, yet analytical staff.

I guess the issues would be twofold in terms of institutions: 1) what the current NH requires to discharge him, and 2) what the hospice requires to accept him as a patient. The wild card is Covid 19. And he is very vulnerable, and probably increasingly so given that he's been in facilities and is in one now.

Does the existing facility have a hospice wing? Or are you firm on bringing him home? If the latter, are you comfortable with what hospice will and won't provide? And it's really not much, outside of a facility. Someone else will definitely have to take care of MIL.

You will need medical supplies, specifically a hospital bed. I don't know if Medicare would provide one during a pandemic, but it's something to determine. And are you and your family prepared for 24/7 home care if your father is unable to move? I watched as 2 nurses or aides managed to move my father as he became more immobile, and I knew that I couldn't have done it myself.

I do understand that you'd prefer to be with your father during the last days. I don't know if the NH could make an exception if you "gloved and gowned", but it's worth asking them, although they also face the fact that introduction of non patients and nonworkers could bring the virus to the facility if they did make an exception.

I don't have any good suggestions; this is one of the horrid aspects of elderly care not only generally but during a pandemic. The US faces a steep learning curve to deal with this issue.


Alternately, since you want him home, I would take the attitude not of "if", but "how" and approach both the NH and hospice on that basis: i.e., what specifically do each of them need to (a) allow him to be discharged from the NH and (b) hospice to begin providing in home care.

Bring the VA in; I'm sure they're more flexible and experienced than the private sector, and a social worker could act as an intermediary. If you live in the area I think you live, there is a VA nursing home which might be more flexible, but I don't know what would be involved to facilitate a transfer there.

Alternately, could the VA provide hospice care in one of its hospitals? I had read in the last week or so that a VA hospital (or hospitals) were accepting CV patients, but I don't recall which areas.

I wish I had some good suggestions; the pandemic has changed so much of our lives, and the private sector for the most part just wasn't prepared for this or for triaging patients, although hospitals have I think done as good a job as possible under the circumstances, especially given the lack of sufficient protective equipment.

4/27 Update
Disaster struck- on the 2nd I went to pick up dad for radiation and found him on the floor. The short story is that he passed out from sepsis from an unknown kidney stone. He was in the hospital for 3 weeks, touch and go as to if he was going to live. With COVID19 we only got to see him twice, when they thought the end was near. He rebounded a bit but has too much damage to operate. In the process he now has necrotic hands and feet and suffered brain damage of some sort- he can speak but isn’t quite right. The plan to bring him home and do hospice was thwarted by Covid19 as we would be quarantined and very little professional help is allowed. Oh- he tested positive in the hospital. He had 4 tests total, all negative except the 2nd one. The nursing home required 2 negative tests to move in. He was stuck in limbo at the hospital for an extra week because the health Dept regulations and nursing homes shut their doors to all new patients.
The VA helped us find one. Dad has been at the nh for 52 hours and fell out of bed. He is bed bound- cannot even sit up so how is that even possible. They tell me they cannot use hospital beds with rails even though he is a “hospital” patient. They classify that as restraint. None of it makes sense.
To make matters worse- the nurse said the day we dropped him off- my brother and I got to see him at the ambulance-he was asking when I was coming back! 😥😥😥 if they had told me I would have come for a window visit. (No visitors due to COVID)

I will be contacting hospice and the health Dept tomorrow (Monday) to see when and what we can do to home hospice and their thoughts.

I welcome any thoughts and suggestions or stories I might learn from in this unchartered territory.

Just a thought: Is there room for your MIL to move in with your dad? That way, when you hire an assistant, they will both have help. It's also someone his own age to talk to. Again, just a thought given your MIL's dire circumstances and your dad's loneliness.

3/16 Update
Dad has completed chemo, and after 7 weeks off has regained mobility. No longer falling asleep, stumbling, etc. He is getting around really well, no more cane! I’m starting to get a few days off here and there. I’m trying to just be there for doctor visits and dressing changes(he can’t reach it). He’s due to start a month of radiation in 2 weeks- so we’ll be back to daily visits Monday-Friday since he will have to go for treatment.
Overall his health has rebounded. I have other issues at home dividing my focus with my husbands mother, that’s a different thread.👍 I’m pleased he has more independence and needs me less. His outlook has improved with some antidepressants as well. Spring is starting so he has his yard to look forward to. 👍

https://www.trustontrial.com/2017/01/watch-out-for-tax-issues-when-paying-california-caregivers/

This is the law in regard to California and private caregivers. I don't know what state you live in but it becomes complicated.

I took care of my father who had advanced Parkinson's Disease. At the end of life had to spoon feed pureed food without any help from my family - NO SHOW SIBLINGS.

HollandGirl, life certainly has changed since you first posted.    I suspected that your father needed to work through some issues, and frankly I'm surprised that it happened this quickly.

But I'm elated!  And happy for the progress your family is making outside of your MIL's financial issues, which hopefully can be mitigated with options suggested by the attorney you'll be seeing.  

Thanks for the update.

This has certainly been a challenging year, hasn't it?   And it's barely 2 months into the new year!

It's such an unfortunate situation for your MIL.   Have law enforcement officials become involved, and if so have they suggested any courses of action?

Was your FIL a Veteran?   I assume your FIL is no longer alive?   I don't recall what might help might be available for widows; it wasn't an issue I explored as my mother passed before my father and between my father, my sister and I, we provided for her needs.

If there are specific courses of action you plan to take in terms of legal redress, let me know.   I might be able to offer some suggestions.  

I hope that your family finds comfort in its closeness, and that from here on out the path will be positive and upward, including some hope for identification and recovery of at least some of your MIL's funds.

Peace to you and your family, as I know it will be welcomed.

UPDATE:
ever hear the phrase “when it rains it pours”? We were just informed last night that my husbands 76 year old mother has been conned out of her life savings, is now penniless and is out on the street down south, 16 hours away. She is moving into a spare room in our home for a few months until we can get her social security back into her own hands, money saved up, and into a senior apartment. My husband is leaving tonight to go get her and her few meager belongings. 😭
I would appreciate any prayers to any and all deities and the karmic universe on behalf of our family.
🙏💕😢

I feel ya. I gave up everything, my home, income and personal social life to care 90 yo mom. She’s difficult (stubborn and argues with whatever I say) And did 24/7 by myself for almost year. Found myself in tears most days. Finally her long term care insurance kicked in and gave me 30 hrs a week reprieve. Tell, don’t ask, your sins you need help before you burn out. Good luck.

A lot of good suggestions regarding time management and boundaries.

My story: my dad was close to 90, always active, chopping trees on his lot, mowing, loved to drive. I had just retired at age 69 in January. In February, dad just went entirely downhill. He had congestive heart failure, chonic renal disease (no dialysis,) prostate cancer, hearing loss, chronic back pain... but he just complained and motored on.

Then he started to feel weak, started falling, went in and out of the hospital at least 4 times within 8 months. Fell at home multiple times, EMTs called for transport to the hospital. Developed urinary retention and had to have an indwelling catheter (which he dragged all over town.) Legs got so swollen that the skin broke and there was chronic weeping requiring wound care. Appetite poor (cardiac cachexia developed.) Mental status went downhill--he was sharp as a tack until suddenly he was not. Could not make it to toilet or commode without assistance. Had about 14 pills a day to take on a rigid schedule. We had to limit his sodium and fluid intake. He could not help himself due to the mental decline.

Brother and I were at the home 24/7. Parents had a large, labor intensive property so home maintenance was a big burden as well. Of course, he wanted to stay in at home indefinitely. However, dad came to realize that he needed 24/7 care, including skilled nursing care off and on. He could not drive anymore (too weak, too inattentive and mentally impaired due to the medical issues.)So by August, he was put on Medicare hospice status and in September, he decided to sell the house and move to Assisted Living. Along with the AL help and Medicare hospice nursing, caretaking and social services staff, dad was covered but we were there almost daily. He passed away about 6 months into the hospice status.

Based on what you have mentioned about your father's medical issues, realistically, he will not get back to his "old" status. His medical needs will continue to mount. Consider Assisted Living, which would be a much safer alternative than living at home. The biggest benefit of AL for you is that there is someone to help if and when incidents happen at night. And you can find a paying job and have some time for yourself and your spouse. This may not be the information you wanted to hear but it's realistic.

I read a post recently regarding a parent whose spouse has passed away. They turn to daughters to fill the void of their missing spouse. Sorry to hear about your father and his health issues, but he must realize that you are not his spouse and you cannot be there everyday. You also mentioned the toll it is taking on you and your marriage, and this is a huge indicator. Seek outside help and it is not selfish to love dad, but you and your family take priority.

Edit - (insert, my poor vision got me again) Take care *OF*.

You must take care pf yourself, else you'll fall faint and ill. Seek out a good counselor.

Seek medical help for the depression and a good counselor. Tell him about your life and your needs and that you must and will need some time for you. He may or may not understand. If not, there is nothing you can do. You must live your life now while you still can. You have a marriage and need a life - work at that first, and be tough. Call him, send cards, occasional visits - but also seek good medical help for him. It is there - just have to find it.

Been there with my Mom. She has recently been having manic episodes, usually late on Saturday nights. I stepped up my visits, spending more time with her, playing bingo and other activities at her AL. And if I can’t visit I call her in the early evening to chat and say goodnight. Having daily contact seems to have calmed her and reassures her that she hasn’t been abandoned.

You are amazing and have taken on some big responsibilities. But remember you have a family and life, too. You also have to take care of yourself and your family. Speak to a social worker and find out what services are available. Perhaps they can also advise your father on his options. He may accept it more coming from them. You say he is in ill health. Things may get worse as he ages. This means he will need aides to come to his home to help or he can go to an assisted living facility. It sounds like either one will be a hard sell. My mother is an a good assisted living facility, and although it took a long time for her to get adjusted, it was the right move. Now she needs far more care than I can provide her. Make sure all of the paperwork is in order with POA, medical directives, will, etc. Be sure you know his medical directives.

I was encouraged when I saw your post & all the great responses. I'm going thru the same situation with my dad after I had to move him to Memory care. He is clingy & depressed & wants me there ALL the time! He says he knows I have my own life, but he's still needy. Grieving over the loss of my mom almost 2 years ago doesn't help him. Before MC he was in Independent Living & did well. I came over at least once a week to fill his pill box & run errands with him. So this leap to MC was unexpected. I've decided to try the strategy of scheduled visits at least twice a week & see how that goes. The staff (so far) has been wonderful to him & they are just as bewildered as I am about his abrupt cognitive change because they knew him before. I guess I'm just blathering now....

Holland Girl, rereading your posts, I thought of a few other issues:

1.   Is your father still getting chemo?    If so, that's a MAJOR stressor on top of just having lost his wife.   I quit work and spent my sister's last months at her house, alternating with my father so she wouldn't be alone (at that point she could only crawl on the floor and was unable to walk).

I know how much someone battling cancer needs to have a lot of support.

My sister's oncologist once asked her if she needed help at home but she turned it down, even though she did need assistance  (my father and me).  

I was able to get PT for her at home, but she was too weak to participate.   That might be an option for your father, just in terms of strengthening his legs, but I think it would depend on his energy level, and chemo can be so draining

2.   Gilda's Club is a good source for emotional support and camaraderie.  I don't know what other options it offers; I haven't been there since my sister died, but they might also have some recommendations.

3.   VA assistance: has he been evaluated yet for what he might need, and for what he might qualify, such as Aid and Attendance?    I subscribe to the VA newsletters, which offer a wealth of information.   

We've gotten VA help both by enrolling directly and using the assistance of a local county VA office, which accelerated the process by using one of the service organizations.   I also spoke with a VFW rep at our local VA hospital and got the best information yet on the differences in Aid and Attendance options.

I'm also P'M'ing some more information on Veteran resources.

Please contact a local home healthcare agency. I brought my dad home to stay with me after he had fallen and broken a hip (he had been living alone for 2 years after mom died). He was not capable of caring for himself and the rehab there was not doing a good job. After 6 months of trying to care for him and keep my 60 hr per week job. I realized I needed help. Contacted several local agencies, read their reviews online and hired one to come 3 days per week for 8 hrs per day. They were to be paid from his social security. This worked well until he began falling and getting UTI’s. Work was getting more impossible and I decided to retire on 10/1 to spend more time with him. Changed the caregivers to 2x per week. And kept the best of them. These women were very good with him, keeping him engaged in puzzles , keeping him clean and fed. We became good friends and the 2 days a week allowed me time for errands. The time I got to spend with him was very rewarding. I had gotten him a primary dr and had some rotten teeth removed when he suddenly died one morning. Peacefully in his room. I miss him and don’t regret retiring from work. They were way overworking me and not appreciating my experience and hard work of course it may not be that close for you as I was 63-had a pension that would not be increasing anymore and could also take divorced widow benefits from social sec. waiting to claim mine until 70. We just have to see what we can do. But get some help!

Death of a spouse is a huge trauma and is often harder on a man than in a woman. A month into the grieving is still "brand new.". His grief has to compounding his problems and his amplifying his need to have you there. If his wife was your mother, you are also still grieving. Respect the depth of that emotion for both of you. Arrange for him to be part of a grief Support Group or th counseling if our father will accept either of those.
It's understandable to want someone to supervise a new home health aide or cleaning service, but once you feel secure about the hired person, assure your father that person is reliable and that you don't need to be there that day.
There are some wonderful suggestions here about setting up a schedule with your dad.
Re best to you. This is a tough time.

Dad seems to be at his new "best" and you probably won't be able to improve his health. It appears dad needs somebody there all the time since he is a high fall risk.

Try a family conference to get everybody's input - especially how each person would help. If there is more unmanned hours than manned... it is time to change dad's living situation: full time help (paid) at his place, move in with a family member (with or without paid help), or move to a facility.

Talk with your family about moving dad in versus moving dad into a facility. Is there enough finances to "pay you" to be his full time caregiver in your home? What would you do if you were sick or your family needed/wanted to get away for a bit? How many hours/days would you need a paid staff member with dad?

Check out your local home health care agencies that specialize in seniors. Usually, inhome care is less expensive than facility.

A parent with dementia or chronic health conditions will never be "normal" again. Every week, there may a "new normal." It's important to accept that.

In the meantime, as others have said, you must set firm boundaries to preserve your sanity. Also, I recommend that you inform dad that you need some days off to unpack your house and to job-hunt - even those are several half days in a row. Your marriage needs to come first!

As you stated, "I cannot be his whole world."