Today, Sun, Dad all of sudden cannot stand on his own wo my husband and 6"3 son holding. Dad is 230 lbs. A lot of diseases. Has declined in their handicap apartment last 6 mnths. Used a walker. Fell July 30th arguing over a water bottle. Refused to go to hospital. I got here too late or I would have made him go. Im starting to suspect this "not standing" is from fall but he says he not in pain really.
NH out of pic. Running out of money. Dad has said in past no NH if we can keep from it. No Medicaid to be filed adn wouldn't help now anyway. Talked to elder atty last wk and immense penalties of probably a yr we found out. Did everything wrong last 5 yrs. 4 doctors said he needs NH and one said palliative care or hospice in home if poss due to everytime Dad in hospital or rehab there is a catastrophe or something bad happens or he is miserable tortued. He is non-compliant and has been pretty much all his life. I was going to call palliative care tomorrow which this happening is weird.
I've been crying having to decide what to do but now he is bedridden and we cannot handle this. Im 5'3 and 122 with very bad low back an S.I joint probs an fibromyalgia. Mom def cant help. Mystrong 56 yr old husband has to work(he came over with my older 21 yr old son who is 6"3 an 195lbs when Mom called that he cannot get up from chair around 5pm) to bathroom) since I can't since 7yrs ago due to parents caregiving. Neither parent have driven since then. So financially we are not good. My 16 yr old in school. Today , Sun 25th, I came over around 11am. My sister, (older 54yrs old an 5'7, had came for a mere 24 hrs to relieve me a tad lives an hr an 20 away,) had left for store and groceries. Dad was in kitchen shuffling more food in mouth and he got up to walk to room (was sittin on walker seat an half on. I told him to scoot back or you could fall!") Griped me out said I was badgering him! So I went 2 talk 2 Mom an he walkedin front of me and stumbled almost falling. He was walking diff than ever has. I said " You ok? R u hurting?" No! But later said hips hurt a little but not screaming or moaning or anything. Then I left.
A nurse comes 3x a day, RT NOW BUT WILL END SEPT 20TH, for check sugar and give insulin. Medicare will no longer cover. I will be doing it . I have med back ground. Sister got back at 4 (?) An apparently fr what Im told, he was in kitchen again in refrig, so walker was behind him an pivoting he cannot do an sister saw him almost fall an grabbed my Moms walker an caught him an rolled him to living room an got him into his chair. His legs just gave. He has been wobbly last couple days. So then nurse came for last shot of day, and said something is wrong. He is bedridden basically now. She helped him 2 bathroom till my husband, 21 yr old son and I showed up. Nurse talked with me crying about putting him on Palliative or hospice for failure to thrive and me feeling guilty like I'm killing then this happened, but no symptoms under control and no compliance and he is miserable with " rules" and we are too.
Arguing over bottle water is why he fell. Congestive heart failure. A-fib. Coumadine. Stg 3 kidney disease. P.A.D., tiny stroke an bloodclot to small bowel which resulted in dead bowel, 23", emerg surgery in 2012 Dec and thats when my caregiver journey started. Diabetes since 1996. Never watched till he got sick and then on insulin. Very expensive. 3 mos is $800. Polycynthemia or too many redblood cells packed. High b/p. Pain issues FOR YRS. Most meds he takes are for heart related like lasix 80 mg but still chugs water like a thirsty horse. I've been in med field since 18. 50 now. But transferring is a no go for me. He's too big. My 21 yr and I are spending night and we had him in quickly borrowed wheelchair and almost couldn't get him transferred to his reg twin bed not suited for bedridden pts. Bed too high up.
I don't know who to call in morning. Nurse will be here around 8:30 for insulin shot. My husband said call hospice. Dad is miserable. I'm sad. Is it right to do at this time?
But how can you keep him from it at this point? BTW, hospice isn't going to provide 24/7 help at home, but I've read here they expect there to be 24/7 care in the home.
Remember also that your mother is at risk...what would happen if he grabbed her walker while she was using it and then they both fell down?
1) your parents have not enough money, not even for home hospice
2) your dad is extremely sick but not compliant about getting help outside
3) you can't apply for Medicaid because of perceived penalties due to how funds were previously managed within the last 5 years
4) you or other family members caring for him is not possible
If this is accurate, then here is the only thing I can think of: call in social services, tell them he isn't compliant but extremely ill and he is a vulnerable adult. Allow him to become a ward of the state. Not sure this will prevent a Medicaid "look back" but I don't see any other way out, financially. At least your Dad will get care and you will get that part of relief. Maybe some one else on the forum will support or correct this info.
There is no way to care for him without spending money, at least not without causing extreme mental and physical hardship to the caregivers. A hospital bed is a must, a lift would help immensely, and a wheelchair will allow him time out of bed and possibly some mobility. If a NH is completely out of the question Hospice may indeed be the best option for care at home.