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amilie Asked June 2019

We put Dad on Hospice but now I'm not sure. What is going on?

My 90 yr. old father diagnosed with dementia about 2 years ago which has brought on increasing mean behavior, then suffered a stroke, spent 3 wks in rehab and came back home. We were mainly concerned with being able to assist with hygiene and mobility since he lost left side mobility but we (my sons, brother, and I) worked out a pretty good routine. Out biggest problem was Dad constantly - like every 6 minutes- wanting to get up and putter around the house. We had to be with him every single minute of the day and night as he would fall without assistance. Last week he went into a drug like state. We took him to the ER for scans and tests. The doctor said the results were inconclusive. We chose to bring him back home and called in hospice. We were able to get him to drink a small amount but nothing else. For three days he could barely be roused. He would attempt to say a few words but everything was garbled. I leave Dad in his home hospital bed Saturday afternoon with him nonverbal and barely able to lift his hand. Sunday afternoon I walk in, my son has him sitting in the recliner, hair combed, fresh street clothing. He says to me, "where the hell have you been? I haven't seen you all week". I am dumb struck. He now insists he needs no cane, walker, or assistance and becomes verbally and physically combative when we try to assist him when he attempts to get up and go. (He'd fall over in an instant) I am at a loss. The doctor and hospice gave me the "it's time be ready talks" and now I have a mean, up every 10 minutes fighting me, demanding father. What is going on? Even hospice seems at a loss. I'm considering velcro-ing him into his chair and trying to tolerate his yelling. I can't even go to the bathroom without Dad trying to get up on his own. How can a man go from almost comatose to this type of personality in just a few days time?

Slekker Jun 2019
Whoa - almost exactly my situation. Dad started showing signs of dementia about 2 years ago, and suddenly, since April, he’s had a VERY swift decline. Like suddenly going from walking to walker to wheelchair over a course of weeks. Suddenly speaking all garbles, doesnt recognize me at times, unable to tend to himself, then incontinent. Over the course of 6 weeks.

For about 3 weeks, he had been agitated all night, every night. My mother and I were losing sleep, and she started talking about sending him away. He wouldn’t settle at night, and we tried keeping him up all day, then sleeping pills - nothing worked. Then he changed overnight to listless, sleeping all the time, uncommunicative, unable to walk or assist in moving him.

He was put into hospice for his CHF, and suddenly everything was moving fast. I thought maybe he was having anxiety or stress, so I started putting CBD oil in valerian tea at night. Suddenly, he’s communicating again, able to stand, help move to the wheelchair, and rest for at least 2 hours at a time.

If you can, why not try the CBD oil to see if it calms whatever is causing his urge to get up and keep moving. It really worked for my dad. The kind I got was by lazarus Naturals, standard tincture, classic. You just start with a few drops until you feel you’ve got the right dose. He’s at 20 mg per night. His tea is Sleepy Time Extra. The valerian in it is also a calming herb.

Hope that helps.

hockeymom1970 Jun 2019
Great writeups by Country and Margaret, I am sending my love and praying for your father and you Amilie!

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MargaretMcKen Jun 2019
You are getting to the end of your ability to cope with this. What about your sons and your brother? Are they doing better than you, or is everyone reaching the end? What would happen if you did in fact throw your bags in the car and drive away? Would your sons and brother take over seamlessly, or would that be the last straw for them too? You need to have a talk to them about it, and see where you all stand.

One of your problems is knowing whether your father is capable of reasoning. A test would be to tell him that you can’t handle this, and either his behaviour changes or he will need to go a facility. See if this results in change. If it doesn’t, and if your family members aren’t willing to take over if you drop out, then it’s true – he needs to go to a facility. You can still love him and do your best to give him company and help him to be happy – it isn’t abandonment.

Countrymouse Jun 2019
This is purest guesswork from a lay person: the scan with the inconclusive results was a bit of a messy picture, and your father's brain's blood supply was compromised (somehow, somewhere along the line) without there being an actual stroke as such, and it's sorted itself out.

But meanwhile, you have an unsteady gremlin in the house yelling for you all day long. He won't use a walker or rollator? There's no improvement in his standing or gait? Does anything engage his attention?

The other possibility is that this is a surge and there will be a relapse. I don't want to burst any balloons, just don't get ambushed is all.
amilie Jun 2019
Into hour 12 today and your unsteady gremlin comment just summed up my day perfectly. Dad's health and behavior is totally unpredictable. It's a roller coaster not knowing if I will be checking his breathing or fighting with him to let me help him when he wants up or change his briefs or turn him down on the trip to Alaska or some far out idea. Sometimes I just want to throw my bags in the car and start driving - away. I believe this might be what I've heard others refer to as caregiver burnout. I love this man, he has been looking after me all my life. But even my patience and understanding seem to have disappeared and I am carrying a huge amount of guilt over this. His doctor said these "unresponsive episodes" may be due to TIA's and will increase. I feel like I'm only able to try to ride it out with Dad but I don't know how much comfort I am to him as I'm becoming as irritable as he is despite the fact I'm only taking 3 days/nights a week now.

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