My sympathy and love go out to anyone experiencing the "sundowning" of dementia. My husband is near 79 years old, goes to Day Care five days per week. From 4 P.M. until bedtime, taking care of him is a constant ordeal. And Sat & Sun are very bad.
He wants to be moving most of the time. One of the baseball games will keep him still for a very short time and even then he will get out of his chair (cannot figure out the controls on the chair) and leave the room during the most exciting part of a baseball game.
At 8 P.M. the sundowning begins! Walking back and forth, straightening any magazines he can find; "inspecting" the legs of chairs, tables etc. Asks me to get his coat and take him home because he cannot drive. And then with all this activity he can many times fall down. And that is another story. He has bruises all over him. Had 16 stitches in his hand couple of weeks ago. Before that healed he had a big gash on the top of the same hand! And NOW has a big gash on under side of lower arm which looks horrible. Had to put long sleeved shirts on him to discourage his removing bandages!!!! etc etc
WHEN does one decide that a nursing home is the place for him to be? WHEN does one decide it is either my quality of life or HIS? I truly love my husband but I am getting burned out after 11 years. Dressing and undressing an adult is tough and dealing with Depends is tough!
Sorry this is so long but guess I needed to vent myself. I began by wanting to tell that we just got "lorazepam" .5mg....dosage 1/2 at supper time. Getting him to take on a new pill especially one so little was difficult so I told him the neuro said this would help him to settle down.......And he TOOK it! Did not see much difference so perhaps he should take all of the .5.
I wish I knew the answer to "how does one know when the time has come for a nursing home?" but I don't. If you have a plan and a "reservation" in one, then you'll feel better able to judge the situation, I think. If you've already done all those things, then the fact that you're asking the question might give you the answer. Especially if that thought comes up daily. You might also want to check into getting in-home help. In the end, once you've made the NH decision, there's no need to feel guilty. You've had a long haul and done the best you could for a long, long time. Sooner or later there comes a time that CareGiving is just too much for one human being.
In January, I started looking at local Nursing Homes and got her on 3 waiting lists. A bed came up at one in May and we placed her there but neither she nor I were pleased with the care: rushing her, not responding to her call button, food not properly prepared, etc.
Last Friday, I moved her to another home and we are much happier. She is getting speech, OT and PT and is not just sitting in bed all day. Her food is chopped for her and good, and she can choose to rest or join in the appropriate activities.
The point of all this is that you must plan ahead. I dragged my feet for quite a while but both the social worker and the nurse in charge of my mom's home care pressed me to look into it before a crisis arose. Then you have to take what you can get.
Yes, I feel guilty at times and know that nowhere will be as comfortable as home. But I sleep through the night now and know she is being looked after with genuine concern and care. I am just starting to contemplate a life for myself and find the possibilities somewhat scary and exhilarating. Mom and I spend quality time together and I take her home for an overnight once a month.
This can never be an easy decision, but it is something to think, speak and act on BEFORE the time comes.
I've watched couples and families agonize over this decision and don't wind up making the decision for placement until the healthy spouse has a breakdown or other medical emergency. But, once the decision is made and the placement is accomplished, it can oftentimes be the best for both the patient and spouse. The more scheduled atmosphere of the facility, along with multiple personnel for care, regular activities, etc., encourage interaction among residents, gives the patient things to do and occupy his time and energies and allows the health spouse to become a spouse again rather than a nurse/CareGiver. There is often an adjustment period but depending on the quality of the facility, this can be short-felt. Take the time now to investigate facilities near our home so that the decision is not made in haste.
You are so right to advise us to prepare in advance of when a crisis happens. That applies to all of us no matter what stage our loved ones are in.
I just had an intake interview at an agency in our area that is a caregivers resource center. They are state sponsored in Calif. I just called to get a list of support meeting for caregivers dealing with dementia as that is causing me more problems than the mild PD is at this time. They had so much to offer at different levels, not just when you really were in need of lots of help. The thing they zeroed in for me at this time was a 6 weeks group session dealing with the "anger and frustration" that we all feel as life changes in unexpected and unwanted ways. I know it will be a great help. I'm on a list to get a little individual counselling. And after listening to me the intake person tried to get me to replace my husband's working car key with one that wouldn't work. At this time he has reluctantly said he would drive without telling me and I'm comfortable with that but can see that he is starting to get more confused. That will be a topic for the counselling. Until then I think he is able to keep his word.
This caregivers list is a great group. I get so much from listening to all your loving care and learn so much from your experience.