My dad is 90 and now alone after his wife died last month. My family moved back to the area last fall for several reasons, one of which was they were both approaching 90 and I anticipated they would need help. It happened virtually immediately with serious medical issues for him, and her ending her hospice journey. He is dealing with grief, loneliness, and ill health. I have been with him every day for 3 solid months between 4 and 12 hours a day on average ( during chemo some days were 24). This chick is exhausted! I have enlisted my brother to come on Sundays so I could have a day with my own family... but dad wants me there then too! We have a cleaning lady who comes once every 2 weeks from senior services and he wants me there too, so I can keep an eye on her. I have recruited my sister in law for weekly dinners which she loves to do (alone now that other brother passed) but he puts her off and just wants me.
I love my dad- but I’m struggling. We were 12 hours yesterday at doctors and the emergency room.... I went over today to drop off a prescription and make sure he was set for the day and came home. He didn’t want me to go but I had a migraine and told him I had to take care of myself with some rest.
It broke my heart. I can’t be there every moment and he won’t come live with us despite being an extreme fall risk and his refusal to give up the stairs in the home. I worry constantly and am frazzled. I haven’t had time to unpack our house or get a paying job.... a source of contention in my marriage.
I just need him to get back to a modicum of good health ... but I fear it will never improve. What / how can I be there for him without sacrificing my entire existence? What are the words to use in conversation to help him feel better about being alone/independent? I suspect he has depression- totally normal- but would never admit it for help. But I also cannot be his whole world- it isn’t healthy. His ill health currently is preventing his driving for the most part- so that’s depressing for him too. 🤦♀️😬
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.
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.
🙏💕😢
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.
On the up side, all this drama has created a new independence with my Dad. Today I was only there 2 hours to assist with his foot dressing change and reach some things he couldn’t get on his own. He had a list for me of things he wanted to discuss and then hustled me out the door to get back to my family, assuring me he was ok to manage on his own. I told him I wouldn’t be there tomorrow and that another family member would be coming to have dinner and the time. I put it on the calendar too. 😁👍
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.
thanks!
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.
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. 👍
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.
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.
😥 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.♥️
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.
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.
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