Little background. Dad, 90 years old with Parkinson's disease, CHF, T2 diabetes, kidney disease, etc. Lived alone with p/t caregivers until 8 months ago when he had a severe fall, surgery, hospital stay, and then rehab (which turned into staying in the skilled nursing facility because he needed 24/7 care). I am an only child, only caregiver, he has outlived all other relatives. I have a teenager and husband who still need me. I am burnt out and depressed. I’ve been doing this in some form for 8 years, first with mom now dad and it has gotten just much worse.
My dad was never formally diagnosed with dementia, but he def has some form of it, and it has worsened in the past 8 months since surgery/fall plus 3 UTIs and flu, all that led to very bad delirium. Two different neurologists were useless about this, and frankly, I am done taking him to doctors. It's too hard and I've been very happy with the care he receives at SNF.
So, his dementia seems to fluctuate. Some days he is lucid and will remember things I've told him, like my husband having a medical procedure and ask about my job, etc. On other days he is very confused. He seems to mostly suffer delusions, thinks he is at work or that his parents or siblings are still alive, and he is going to visit them, stuff like that. Most of the time I am able to distract him or redirect. But today was just bad.
I visit him almost every other day at the SNF. Today the nurses told me he was at the front desk asking to call a taxi to take him to rent a car. When I found him, he was trying to open the backfire door. I got him back to his room, and he kept going on and on about needing to rent or buy a car. He needed to get to the car place to get one. I tried everything, distraction, redirecting, etc. and he kept insisting about getting a rental car. He was getting more and more agitated with me when I wouldn't agree to take him to get a car or if I reminded him the Dr. told him he can't drive (when he first went into the SNF he knew we sold his car to my cousin and was happy it went to her and even called her to tell her all the things she needed to get checked on it).
Is what I have seen referred to as looping? How do I handle when he gets like this? Nothing seems to work. I left upset and then it affects me and my family.
Maybe the doctors are not helpful because there is really nothing they can do. But I do agree that knowing if he has Lewy is very important. Symptoms of Lewy are very similar to Parkinsons. There are medications that should not be given if Lewy is involved. They are deadly.
Does Dad do dialysis? If not, I would not start it. Those with their minds its very hard on. Two of my friends chose to stop it. They passed withinb2 weeks.
BUT..the LBD should be confirmed. (LBD= Lewey Body Dementia) The "problem" with LBD is that there are some medications that can be given to people with other Dementia's that should NOT be given to those with LBD.
If he gets to a state that you can not redirect, distract then ... walk away. Trying to get him away from whatever he is fixated on is not going to work and it will just upset you and agitate him more.
Do you think he needs a change in his medication?
Problem here is that you are ALSO dealing with Parkinsons. Then you are ALSO dealing with basic failure in all the crucial systems one at a time, which means that sometimes your Dad will have a fully oxygenated brain and other days he is driving on 1/2 tank so to speak.
You Dad is very ill. I don't know how long they will allow SNF but it is the care he needs and may be the care he needs until he dies. As to looping, I am unfamiliar with it, but whatever word you are looking at you have a very ill Dad, and quite honestly he may never again be well; not everything can be fixed but he is in the right place for them to try.
I think your family may soon be looking at questions such as dialysis and whether or not to do it or go on to hospice. Whether your father would rather live in this state, possibly in a nursing home, suffering from this multisystem failure or whether he would rather that nature take its course. Only you knew him and only your family can answer this.
I would caution that you NEVER attempt to care for a gentleman this ill, even in a hospice situation, at home.
My heart goes out to you and to your Dad as well.
I know he won't get better. That is not what I am seeking. I am just trying to understand this up and down dementia, just as you described with LBD, and how best to handle him when he is in this state.
For now, th SNF has said it's not time yet for hospice. Not sure I agree but I cannot get his neuro to help with anything so I know they won't help with that and we are pretty much using SNF doctor now for most everything because trying to take him out to doctor appointments in this state on my own is too much and it's too hard and confusing for him.
And you shouldn't feel guilty if it's too much for you to visit more often. It is heartbreaking to watch someone we love turn into someone we know they never were. I believe it's actually grief that people experience and for some reason tend to call it guilt. The 2 words are very different as you know.
All of us that have lost a loved one or are losing a loved one to any of the dementias, will tell you that you grieve through the whole process for the person you are slowly but surely losing to this horrific disease.
And with all the dementias things never stay the same. Things will continue to get worse as time goes by.
So let the folks at his facility take care of him and go when you want. And if it gets to be too much for you, just leave and come back when you're better able to handle things. You're human, so quit beating yourself up for being so.
God bless you.