Helping Those Who Care for Parkinson's Patients
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I need to reach out to you all to let you know I am spending the last night with my husband here at home with me. My inability to keep up with the complications (agitation) from him not knowing who I am, the ever increasing hallucinations and my own Traumatic Brain Injury has resulted in my decision to place him in a memory care facility. Sheer exhaustion and desperation caused me to call the only facility I could consider to see what kind of a waiting list they had so that I would at least be armed with information moving forward. I was told that there was no wait list and they had a single occupancy room that was being offered at a $2000 per month reduction for the full length of time that the resident is there -a marketing decision to fill the available room- a corner room with windows on both outer walls-one viewing a garden courtyard and the other overlooking a lake). It is not a ‘nursing home’, it is a bright, beautiful locked community whee there are activities available-their own bus to take residents to see the local botanical garden, local waterfalls and murals as well as picnics, music therapy and a restaurant style meal area with wait staff. There is enough staff and community space that it is not crowded but pleasantly populated with people of different levels of ability. It smells fresh and my daughter and I did not ever get a whiff of urine or overwhelming cleaning fluid) I thought it would be priced well beyond what we could afford but I researched care for his level of need and found this price to be favorable not to mention the other places were just nursing homes as much as an hour or more away. I called my financial guy and I am doing whatever it takes to make it happen. I know that I can live on next to nothing by myself ( I have up to this point been a low maintenance girl) and ‘you can’t take it with you’. Our daughters jumped at the chance to offer their full support - they admitted that he needs mire help than I can provide here at home. Everything fell into place after I phoned them. I think I was (am) so overwhelmed that I just cannot continue at this pace no matter how I wish I could. I was in tears on the phone with my youngest when I said that I wanted to be enough for him; I wanted to be able to give him my unconditional love when I realized that, right now, for us, this is what unconditional love looks like. Coming to that recognition is giving me the strength to do this. To be honest, I do not know what I would do if I did not have this change happening tomorrow. My TBI has not left me with the ability to investigate home health workers, background checks, days/hours of coverage, last minute cancellations, changes, taxes, etc. i cannot attempt that patchwork coverage. This feels so hard even though as noted above, it is absolutely the best case scenario possible. I have to believe I am doing the right thing and that he will get proper assistance. This facility is 10 miles from home and completely convenient for all friends and family to access at all times. I am fighting the feeling that I am letting all you hard working caregivers down. I will figure out my caregiving role for him while he is at this community. It is complicated by him not wanting to be around me. I wonder if he might by some miracle recognize me and be comforted once I can have someone else handle the seemingly thankless task of daily personal care. Well I have told you all and gotten this off my chest. Not sure I will get much sleep tonight nor, as I see, is he. I am setting off on a new way of life with him and I am sad, scared,lost, tired, worried-but we are no longer on a sinking ship. I am trying very hard, as I make this change in our lives, to believe in myself. I will keep you posted- NoMatterWhat |
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| You are not letting anyone down. There comes a time when you can do no more, and the difficulty level becomes so high that continuing would only harm you both and do no one any good. My aunt recently had to put my uncle in a nursing home. I knew she would feel guilty about it, but it had to be done. It was time. It's ok to feel whatever you feel. But know we have your back, and (I think) have a pretty good idea of some of your feelings, mixed though they be. You really have to take care of yourself now, and know that that is ok. |
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| Bless you NMW you are doing what's best for him and yourself. It doesn't mean you love him less, it actually shows your love for the greater good |