He can communicate - I think he just gets agitated and pulls at them. I just hung up with the nurse in assisted living and she says he has never, ever done that there. He has always been a horrible hospital patient. In his dozens of hospitalizations over the past three years, there were numerous times he called me repeatedly (even at 3 am) to say that he pressed the button and the nurse had not yet come to answer it.
My dad was an awful hospital patient. One of us kids would have to stay at all times so he wouldnât pull things out or attack staff. He really had bad sundowners and Iâm grateful my brothers would stay with him overnight.
It sounds like youâve found him a good situation for when heâs discharged. Good job!
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I posted about 3 weeks ago about my dad nearing his end of life. He passed away 10 days ago peacefully at home. He was on home home for six weeks. His vascular dementia was initially diagnosed in 2016 and it progressed fairly quickly beginning 2020. His decline became more rapid each year and speeding up even quicker the last 8 months.
Due to Christmas and holiday breaks, every family member was in town or came in town to spend time with my dad even if he was not able to engage most of the time. I believe my dad waited as long as could to say good bye to each member in his way. He was always thoughtful that way.
When my mom and I noticed distinct changes to his physical health and behaviors in February 2020, my involvement in their lives became a daily event. Luckily I live only about 20 minutes from them and I was not working. Throughout dadâs life prior to 2020, my dad handled all aspect of his and momâs lives until then, except for shopping and preparing meals. I gradually took on every aspect of overseeing their lives. Sometimes I feel incredibly about guilty taking away his âresponsibilitiesâ and think maybe that made his decline faster, because he didnât have a purpose. Driving, overseeing bills and finances, house maintenance and management, esp gardening and landscaping, daily medication management, medical appointments and oversight, etc. Little by little, he had to give up control and I know it made him sad. The hardest was giving up his driverâs license and paying his own bills.
My dad was able to stay in his home until his passing because of my mom. Without her, it would have been impossible. She has some physical discomforts, but overall sheâs mobile and never stopped her role has a traditional wife who took care of his daily nourishment and care. There were many occasions when I strongly advocated for better safety features in the home and hiring additional aides. Each change I advocated for was a battle; some I won them over, some I couldnât budge them. Overall, it helped that I saw them daily and knew what was non-negotiables in terms of care and safety for both of them.
In the beginning, I thought if I helped with getting things settled, organized, managed, etc. dad will be ok. Just when I thought one battle was won and he and mom were following whatever new regimen was needed so problems can be diverted or avoided, another new problem would pop up. This was the constant cycle for the last three years. TBH, it was incredibly stressful and exhausting and I was resentful at times that my life was taken over by their problems and needs. So my involvement in their lives became daily. There were good times too and those are ones I hold dearly.
During my dadâs last week, I knew he didnât want to live any longer even though he couldnât speak for himself. He stopped eating and drinking the last 10 days; this is exactly what hospice told us to expect. He was bedridden the last 6 weeks of his life. He was a life long independent who was physically so strong and active. This past summer, his verbal skills declined quite a lot. However, on one occasion he asked me when he should die. I joked when heâs 90 (he was 89 at the time). On another occasion he asked when is his âappointmentâ to die. I replied life doesnât work that way and dying isnât easy. He didnât like my answer.
During his last hospitalization in November, the medical staff finally approved sending him home with home hospice. I am grateful for it because it allowed him to naturally let go without unnecessary interventions. I am not saying the last six weeks were easy by any means. My mom hated having a 24-7 live caretakers. She hated having strangers in her home. It was also incredibly hard for her to see him completely bedridden 24-7. One of my sisters fought hospice recommendations every step of the way and wanted to find ways to prolong his life. I had to continuously fight the battles about what is best for dad. In times of stress and grief, I learned that some people canât separate what was best for dad vs what is best for their own feelings.
I learned a lot of lessons over these years. One, no matter how much preparation is done to avoid problems, disasters, etc., some things are just inevitable and unavoidable. Two, it really is important to be in physical proximity to provide assistance and care. I donât think I could have done it well if I lived far away from them. Three, having an emotional support was essential for my well being. My husband and one of sisters who lives in a different state were there for me when I needed advice and more often allowed me to just complain about the problem of the day.
My mom, after 56 years of marriage, misses my dad, but sheâs now ready to live her life her way. (My dad was very dominate and controlling.) I still have to be the constant in her life and my assistance will continue. Sheâs hoping it doesnât have to be daily so I also can have my life back. I donât post often but I have read a good deal of the posters experiences and advice. They have given me insight and perspective throughout my dadâs journey. Thank you.
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Iâm so sorry for your loss!
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Iâm also sorry for your loss! And appreciate learning about your experiences.
Thank you.
Thanks.
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Iâm so sorry. Itâs a mixed bag of emotions when someone dies for whom youâve been a constant caretaker. You feel simultaneously the real loss of someone you love and also a kind of relief at hopefully regaining your own life.
I donât think I could have managed without my sister. We were both able to check on him and then later stay with him switching on and off. Just to have somebody to rant to who understood the problems was invaluable.
My dad used to ask me also when heâd die. I told him God didnât print expiration dates on us but perhaps we had a âbest byâ date somewhere.
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Your story touched me. Even if your dad was sad at the loss of independence he had to know that they couldnât have done things without you. And you showed him that when his time came to pass, that you had the heart and soul to help your mom. <3
I remember my dad on his last day being largely unresponsive. He had a short illness of about 3 weeks which was basically just his body shutting down. I was alone with him in his room for a minute holding his hand and just talking randomly to him. At one point I said something like âare you doing ok dad?â - quietly but plainly and calmly he responded âgetting ready to dieâ. Iâll never forget that. The nature of his voice when he said it made it comforting to me.
I am so sorry for your loss, and thankful that you took the time to share with all of us who are doing this now. May you and your mom both find some peace and stability in 2023. Your dad was a lucky man in both of you.
@cag60093 I am so sorry for your loss. May your fatherâs memory be a blessing. My dad died in 2014, a month before my daughter graduated from high school, and it took me a long timeâat least six monthsâto stop ruminating about the what-might-have-beens, if I had only, etc., etc. And looking back on my fatherâs final two years, I can see how disruptive his decline was to me and to my daughter. I can now say that I was a âgood enoughâ daughter, just as we all want to be âgood enoughâ parentsâno one is perfect, we all make mistakes and let things slide or over-involve ourselves along the way, but it is clear from your post that you did the best you could, to the great benefit of your late dad, and now your mom. May he rest in peace, and hoping for the best for you and your mom. 
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So the potential facility for my father does not have any beds. He needs rehab and can not ever go back to assisted living. I am clueless how to make this work - how can I guarantee a LTC bed when his rehab is done when I donât know how long rehab will last? Also, I am trying to make him have the fewest moves possible. This is much harder than I thought it would be.
Found a spot at a place the lawyer knew somebody at. Short term rehab bed ready now - hopefully LTC bed ready for him when he is done with rehab.
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@kiddie glad you found a placement. Those nasogastric tubes are a nightmare for sundowners. The hospital provided a 24 hour one on one person for my mom because hospitals cause delirium for her, and she kept lunging for water which you cannot have on the tube. They did not allow restraints so the aide was hired by the hospital.
Hope things go better!
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@cag60093 so sorry for your loss and you were so good to your dad. Your post has a lot of wisdom for others so thank you. It sounds like it was peaceful. Take care of yourself as you adjust (I am also adjusting in similar circumstances!)
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He has a nasal canula for oxygen not a nasogastric tube. He get agitated and pulls it out - his oxygen level goes down and then his cognitive skills go down also. Not a good cycle. His lawyer and I called several places before finding something, the lawyer knows the person who runs this facility so that is good.
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@greenbutton Thank you.
@oldmom4896. Thank you for sharing your insight and wisdom. There was definitely a big learning curve along the way. I am glad that he was in his own home in his last years, even though there were many challenges. However, since his decline started in February 2020, covid did not allow for us to have many options for care. My mom and I just had to do it. I really like your âgood enoughâ thinking. Yes, life is definitely not perfect so we canât be either.
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@compmom. Thank you for your kind words. I know how much you did for your mom over the years and how devastating her loss was. Your devotion and advocation for her needs were good guidance for me.
This forum has been so helpful. Wishing you healing over time.
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