My DH has Parkinson's and dementia, and he is becoming more and more difficult for me to handle emotionally and physically. He does not know me much of the time and is suspicious of me. I am becoming an emotional wreck, and I find myself crying often and wondering how much longer I can keep caring for him. I know he will resist moving from our home, and I would appreciate any insights you can give me.
One that will meet his care needs and one that you will have no problems visiting.
In my opinion a person with dementia should not be in AL just for the safety aspect. (people can wander out of AL where the MC is typically locked)
Deciding to place someone is one of the most difficult decisions and if you have come to that decision it has taken a lot of thought and soul searching so PLEASE do not let anyone try to change your mind (try "guilting" into not doing this)
I can tell you he will be upset.
He will probably decline a bit
But he will be safe
He will be cared for 24/7
And you can be a spouse first a care manager second and a caregiver lastly.
Ask for a few suggestions of "How to move him" from the staff, they have been through this more than a few times. They will help him and you. It will not be easy no matter what you try to do to make it so.
No matter, my husband and I started on our journey, officially, when he was 63 and I was 57. He died when he was 78.
Eight months before he passed, just about when I was down to one brain cell, nuked nerves, and to-the-marrow tired, (I'm here to tell you, a person can live on 3 hours of sleep daily for decades for love. You probably know.) I forced myself to take him to a dementia day care for 2 days a week attendance. It killed me to take that step. He was the dearest most exquisite gentle, pleasant broken man who had become the dearest most exquisite gentle pleasant boy who needed more constant protection, attention and care.
To get accustomed to this strange new facility and experience in our lives, together we attended events, coffee and cake get-togethers, little fun lectures, sing and dance alongs if we liked, tag-team art classes (we took turns painting on the same canvas. I still have it on my wall), and meals. This way he became familiarized with the surroundings, the super engagement and care, not the least of which was the new bi-weekly habit and route I drove to get there.
During those first introductory days he was observed and assessed in order to be placed into one of the 5 groups of ladies and gentlemen with similar capabilities. Btw during his short 4 months at this wonderful facility his capabilities (as his disease was already in its last stages) naturally declined and he was transitioned to a group of less capable folks. He didn't notice the smooth move from the blue room group to the green room group of more childlike diversions. Shoot me now this made matters more apparent. It may not have been as noticeable had I kept him at home. I was always hoping. More sadness. Reality became more pressing. Looking back, it was useful and important.
I'm going to continue with this story because I think you need to do what you know is obvious even though it is so painful. He needs you stronger then ever and to take care of not only him. You are his lady-knight in shining armor.
Day care - I knew I had to let him go, even though it tore my heart out. You'd think by my feelings I was sending him to be keelhauled. At first I sat in that facility’s parking lot for an hour after I dropped him off. We couldn’t afford more than two days care each week. I had to be careful with money for his inevitable more costly more intensive future care.
Four months before he died his capabilities had decline severely. This turn coupled with years of my self-neglect and postponement of my cancer surgery forced me to place him in a full time memory care facility. Yes, about $10,000 a month, I didn't care, whatever he needed, I'll figure it out later. The only affordable place in my area was 40 miles round trip. Except for one excruciating (for missing him) week for my surgery, I never lost more than a few hours of not being near him. I was even permitted to sleep in the same room he occupied.
It's been over a year now since I lost my most dearly beloved. Looking back I remember that all along the way I was greatly helped by the recommendations and advice of fellow caregivers in my support group. They gently clobbered me with the realization that I was shot, and that it was time to act regarding getting hands on help. They also gave recommendations regarding which facility was better than the another through their own tried and true experiences. We became a family. We sat at neighboring memory care dining room tables spoon feeding our loved ones, and talking about other things. The fellowship in this band of the fractured was consoling and strengthening.
Knowing what I now know I would've done many things differently, but taking charge, breaking through fears, doubts, and unbearable fatigue is what is needed most from you, for the both of you, and now.
I had already picked out an assisted living facility but was unable to get my mother to leave the house anymore because she was paranoid I would “ put her in a home “. My mother had dementia was unsafe living alone and was refusing showers , incontinence care . She refused any hired help to come . She also was living on cookies and throwing out the meals I brought .
The Agency of Aging sent a social worker to do an assessment . The social worker was willing to return 2 weeks later with “ a strong helper “ to physically remove my mother from the home and bring her to assisted living . The social worker set up a time and date with the Assisted Living that I had chosen . I can’t tell you how it would have worked out because Mom ended up in the hospital before they were scheduled to return to remove Mom from her house . She ended up going straight to assisted living from the hospital a few days later . The assisted living was able to rush getting her room ready . I had Mom brought to assisted living in a medical transport van , best money I ever spent . I did this because I knew that she would have refused to get out of my car and demanded to go home.
If you ever feel unsafe , he becomes violent , call 911. Have him taken to the hospital . Then you tell them you are not safe and are unable to take care of him . Then the social worker there could help you get him placed in a memory care .
Have you looked at facilities ? If you have and you know which one you want , would you be able to have him transported there say for lunch ?? Do you have children or someone willing to help ? Some families have the room set up ahead of time , then they bring LO “ for lunch “ . Then the staff takes over , and you leave .
Good Luck . (((Hugs))))