Money is a big problem here. Their income is too much to qualify for assistance and yet they don't have enough money to pay out of pocket. My niece is the primary care giver for my sister (88 with dementia) and her husband (92 and just old). Many meds have been tried to help sedate my sis but they don't work for one reason or another. They try to keep her awake during the day as much as possible. Herbal meds do not work. She either chants or screams for hours. My concern is for my niece and my BIL. With neither one of them getting decent sleep, I'm worried that one or both will wind up ill or....... Suggestions please.
Yes, you are right, it really does make me cross. Just remember that the family did not promise how they would be treated when they stayed at home. You need to make the facility seem like a better option. That's if the family wants to stick to the promise. And just check if any of them are divorced, and how they coped with breaking the 'marriage' promises when things turned out to be different from expected.
Give them the option of staying in ‘their home’ with very little support, or alternatively agreeing to go into a care facility. Two days with minimal food and care will probably do it. If you like, leave them to spoon up flaked oats and milk,. That's particularly healthy in the short term but terribly boring. Then they can change their own minds.
You should take over the care and management of your sister immediately so you can place her in a SNF with Medicaid funding the bill. Let your niece and her DH off the hook for all of this. They've done more than enough.
No one cares about well intentioned but ignorant promises about not putting them in a facility.
It would be better to place your sister in a skilled nursing facility using Medicaid (which is different from Medicare). That way your brother-in-law will know his wife is in an environment where it takes a village to help her. And now he and their daughter can get a restful night sleep.
In my opinion the person responsible for making them promise wanted to relieve themselves of any accountability for this situation. And place all fault on the caregiver if they are to be placed.
I hope your niece doesn't feel guilt that this situation is heading to placement.
All night long. Drove me crazy!
One thing that helped me was a medication, Trazodone. It is very safe and it knocked him out, when no other drugs would.
Another thing that helped me was moving out of our tiny one bedroom apartment into a larger house. I now sleep in the spare bedroom. He still has nights that he can't sleep and moans, groans and yells for help all night long.
I simply can't get far enough away to not be bothered by it.
For the most part, he is on a regular sleeping schedule, with the help of Trazodone and now Depakote, which I give 30 min to an hour before bedtime.
Keeping a consistent routine is very helpful. Not overstimulating the person with dementia is also advised. Any change in routine or overstimulation can cause the nighttime agitation.
Does she have a tv, or large computer screen in the bedroom? You can play soothing scenery and music, or really simple animated movies. My husband watched animated movies over and over again, like a young child. That may help to distract her and keep her calmer.
I wish you all well. I know how frustrating this is! It's awful!
If she can qualify for hospice care or a nursing home, that would be best.
If it's their income won't allow this extra expense, try asking family members if they can assume some of the other bills the couple has to pay or contribute to the extra help expense. Maybe someone in the family can afford to help financially even if they won't help physically. Are there any expenses that could be cut off in order to come up with some extra cash? Prioritize all the bills to see if some are luxury while others are necessary.
There should be much concern for the niece and BIL. They will wear out. They may have to work out shifts between the two so that one is sleeping while the other manages care.
I would see an elder law attorney to work on placement that will accept, for the two of them, their income, with Medicaid applied for once income exhausted.
I am so sorry. Sounds as though this just isn't working, and I don't think there is any longer affordable in home care over more than a couple of hours a few times a week, which just won't help you.
I sure do wish you the best of luck.