Got a call from mom's senior apartment complex manager Sept 2014, letting me know that over a half dozen tenants had come to her with concerns about my mom's cognitive abilities. My mother has always been a mean and vengeful person and had written my brother and I off all through out our lives so by this time it had been years since our last contact. I spoke with my brother and we decided to go make a home visit to see what was going on. Her place was disorganized which she said poltergeists were doing...that they were constantly moving her things around. The food in her fridge was rotten, dishes weren't done and you could tell that it had been ages since her shower had been used. She was pleasant. Seemed matter of fact stating that the neighbors and maintenance man were stealing from her when she wasn't home because she couldnt find things. Verbally, she seemed fine, able to carry on a normal conversation. I spoke with my husband and we decided to offer her a room in our home while we got her Medicaid and located an assisted living facility. We offered and she jumped on it. Hindsight-HUGE mistake! I should have called Senior services while she was still living in her apartment so that they would have to figure it out and find a solution for her. Senior Services said she didn't qualify for the Medicaid assisted living benefit. That kept her square in my lap, in my home. We were stuck. So, I put on my big girl panties and decided I was doing the right thing and would do my best for her. We added fifteen pounds to her frail 85 pound frame. We started to see the effects of dementia immediately. She accused us of stealing things which we would find exactly where she had placed them, she refused to shower, she was still driving and ended up lost and slept in a parking lot. She had creditors calling and was going to her bank almost every day withdrawing cash to go gamble(always had this addiction). At this time I called her doctor to see if we could get an evaluation done by a neurologist. Her primary care said she had to be seen by her first and that they would do a test in their office. Their test lasted 10 minutes and they said she was fine??During the visit she was concerned about chest sounds so referred to a pulmonologist and sent us to x-ray. The Pulmonologist said he could tell that she had dementia( his father had dementia and so he was very familiar with it) so spoke with me concerning her results which were severe emphysema in both lungs and a wallet sized mass in the upper lobe on her right lung(nsclc in his opinion), and said she was not a good candidate for treatment which I agreed with, as did she. Her primary care physician referred her to Hospice and we started that process in July 2015. Through Hospice we found medications that helped with the dementia(the aggression, spitting and hitting)with the goal being to help make her 'final days' happier. It was determined that she was early to moderate stage 3-4 dementia. As crazy as it may sound the dementia was the most troublesome of her symptoms for us. She was on hospice for 18 months when they decided to sign her off. The dementia over time worsened but her lung mass and emphysema seem to be stablizing. So now we are on our own with a referral back to the pulmonologist to get a clearer idea of what we are dealing with. In the almost two and a half years she has been here she has gone from stage 3 to 5/6. She no longer knows what day month season or year It is. She now tries to find ways to go home. No appetite but will eat 2 to 3 small meals or nutrition drinks offered to her. If you ask if she is hungry she will say no so we just give her the food. Her gait is unstable, she refuses to use a walker but will allow the wheelchair when we go out. In many ways in our situation the dementia appears to imitate multiple personality disorder. You just never know who you are going to have at any given time. The delusions are more frequent(no UTI). Even though I know I am doing the right thing by her, it is taking it's toll on me, my husband, my family. Oregon health plan will kick in for a memory care facility when she can no longer toilet herself and feed herself. Realistically, that is years down the road. I am sleep deprived, have gained fifty pounds since she moved in, ears ring incessantly, live in a fog with family very concerned. A positive..I have found out who my real friends are. Would I do it again? Sadly, NO!
I know I made their final years so much better. Their wish was to stay in their home. I made that wish come true. Those are a huge comfort to me now that they have both passed.
I am not saying it wasn't a difficult challenge for me. And, I do not recommend most people go down that road. I had a lot of in-home caregivers coming in ..so I had a lot less stress then most others. My parents were financial very secure and so the payment of additional support service was no issue.
I am glad I did it.
He was living alone, 1000 miles away, struggling with early onset ALZ at 65. So called friends were a joke when it came to aiding him; they were taking advantage of him, making light of all the mishaps. Life for him was becoming an accident waiting to happen, they thought humor was the answer.
Brother/sister dynamics were always a struggle, his choice. I always wanted to fix our relationship, did I think I could win over ALZ? That wasn't to be. The trials & tribulations a caregiver goes thru is many, it's not just bonding moments we crave. They creep up, often by surprise, they keep us going. We know we made the right decision.
It's a personal choice we make at a time when things are less than perfect. We shouldn't ? ourselves so. Remember the circumstances you faced & how you persevered. You did good, da** good, in adversities too many to mention.
Blessings 🌸
I feel that way with mom. Some days she is smart enough to maneuver her last few dollars around from accounts she had opened for grandchildren to give to my stupid brother and the next day she can't figure out what to have for dinner. I have wondered is part of this an act?
There is a correlation from the gut to the brain. I believe Ray (almost 96 years old) was dealing with Candida Overgrowth and the probiotics and Candida Support has really helped. It also helped with his appetite, he's eating real foods again.
There are many out there but the one I chose is only $14.80 and enough for both of us for the month - yes, I feel better too. The one I decided to try is Shelf Stable (refrigeration not supposed to be needed) Healthy Origins Natural Probiotic 30 Billion CFU's and the Candida Support is by NOW and about $20 for 2+ months for each of us.
I would recommend trying Probiotic's on anyone exhibiting symptoms of Dementia - I can still remember back in the 70's when it was linked to poor nutrition but you no longer hear about that.
Some of the stories on here say that Mom-Dad-Whomever has always been abusive. Well, it's still worth a try I think. But I really can't say. Thankfully I have never been in an abusive relationship. But I have witnessed declining nutrition in the elderly. Sweet just tastes better :) than veggies, lol. Yes, to me too.