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@tsc I guess I set my expectations too high with the facility I chose for my 64 yo husband. I liked the answers I was given when I toured the facility I was looking to place him. There was no isolations, no sedations, and residents had free roam of the entire facility with restrictions (doors that didn't open), and the ratio was 4-5 residents to 1 caregiver...all things that I was happy to hear. This was a dementia specialized care facility (so everyone was in a different phase of their journey) with only a 42% capacity, so I figured he'd get the care he was used to by me... picking out his own clothes, eat whatever I gave him, helping him shower, etc...all the things you were doing for your hubby. There was nothing real special about the facility, like gourmet restaurant, swimming pool, etc but as long as it was safe and he was being taken care of, I would be able to rest easy. Boy, did I get an awakening. I would drive 45 minutes about 2-3 times a week to see him and he'd be in the same clothes, toothbrush VERY dry, OH AND they had him in adult diapers after day 3. I was told in case he was incontinent they would be able to control his accidents. They never asked me about his continence, they just assumed which rubbed me the wrong way, mainly because he started developing sores on his butt which I think was due to the material and he said he didn't like them cuz they were for girls lol. His care plan stated he needed help with toileting but when I would visit, I would find dirty "diapers" laying on the counter or the floor. When I asked about his oral hygiene and clothes I could never get a straight answer, I was told "i'm not sure, but I'll check" and I never did get a straight answer. With this transition which was SO far off into left field than what he was used to, I couldn't keep watching him decline faster and faster. Oh, did I mention that he looked 10 years older (all within a month), he looked confused about his surroundings, after 30 days he still didn't know how to get to his room, he was now always looking down and never smiled anymore. The hardest decision I've ever had to make was to place him in a home but I knew that he needed more care than what I could provide... like behavior changes/challenges, no longer being isolated (he has lost interest in a lot of things) and being around others with dementia, but the easiest and best decision I've made was to take him out of there and back home with me where he will get the care he needs.... the loving touch, ALL the comforts he was used to, etc. He now gets a shower more than once a week, his clothes are changed every day and he toothbrush in never bone dry anymore AND he's smiling again 🙂 I have a different attitude and outlook with our day to day lives, and i will give the facility credit with helping me with that... like more patience, more of a loving voice, soft tones, nothing is so important that it can't wait til later if he's not ready for it... like taking his meds, or going on errands with me. I am now in the process again of searching for an in-home care provider to help me with respite care and cooking meals from time to time. I know everyone's journey is different and our journey will involve us not living apart, getting in-home care and providing as much joy as I can provide him for the rest of his life. He IS the love of my life and i tell him that everyday and altho he has severe aphasia, he always tells me he loves me too and that I'm the best-est girl and those words warm my heart and make me feel very loved even if he doesn't always remember my name.

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Replies to "@tsc I guess I set my expectations too high with the facility I chose for my..."

My mom broke her leg a few years ago and was put into rehab - I felt like I had to be there every day to make sure she was taken care of. Since my father died last year, two of my brothers have told me (and my mom) that if I weren't here, she would be in a nursing home. I promised both Mom and Dad that I would care for them. After your experience, I intend to keep that promise.

I am so sorry you experienced that. Not all facilities are like that at all! Still, you need to keep an eye things no matter where. I believe all states have facility inspectors and you can report suspected or actual, violations, negligence and abuse. Also, I believe many cities also have a local "Ombudsman" that acts as an advocate for residents in facilities. You can also contact them and report any issues.

My relative had been in assisted living for years now and while there were some issues at times overall it was the best thing for everyone. Within a short period of time after arriving at the facility they literally went from being unintelligible and immobile to being almost like they were their entire adult lives, but they are far older now.

Your experience scares me. I hope I do not have to place my wife in a home. It is so hard to fine a good one and the help changes a lot as does management. A good home today could be a poor one tomorrow.

Dementia at any age is so sad, but at 64 yrs old, how cruel. You did your due diligence and thought you had found an appropriate facility for your husband's needs. Understaffing and low pay contribute to the quality of care, but that shouldn't be an excuse for substandard care. You are a wonderful example of the most important thing a spouse or responsible relative can be....the patient advocate. And how fortunate that you (so far) have the ability/means to resume his care at home and were able to reverse his rapid decline due to neglect at the facility. Not everyone could have done what you did. It is almost a certainty that he will require more care than you are physically able to at some point, but if you have the financial means, hiring in home care (which you can more easily supervise) will allow you some personal freedom while insuring he gets the best care possible. For those not so fortunate, at least visit the facility as often as possible and be the patient's advocate to all of the staff involved in his/her care. The level of family involvement is an important factor when staff and resources are limited (which is nearly always).