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 miss him and his mobile home - but I got to really know my dad in those few years and I am thankful even for the days of, "my remote won't work anymore."
I was lucky - he was never violent or abusive during that time. He was extremely thankful.
When the time comes that he can't live in his house I will have caregivers stay with him. When that becomes unsafe he will have to go to an assistant living place.
For me it's not about loving him, it's about what's best for him and me. I'm not a caregiver.
Nicole
I'm so sorry to hear what are you are going through. I know there is a lot on you. The burden and responsibility is overwhelming. Everything is always 20/20 in hindsight. I don't think any of us know what we are getting into till we are in the trenches. And even then we try so hard to keep our heads above water. Its so hard to find the right balance.
Please try to look for other options. Consider talking to a therapist, social worker, counselor, joining a support group or accessing resources through church or the community.
If we caregivers run ourselves into the ground, we are no good to ourselves or the people that depend on us.
I was my dad's caregiver. I tried and tried. And now that he has passed, I deeply regret the last year of his life. I let the resentment and anger affect my judgment and compassion. I never told my dad what I should have always thinking we would have another day, but we didn't. I know its hard right now, but I hope you can find the balance.
Thinking of you.
But, if you had asked me about two months ago...NO WAY. We were in a particularly rough patch at the time.
Ask me again in a few months and who knows.
The one thing I wished I had done sooner was spend her money on her care. Initially, I was trying to do everything myself and only brought in a caregiver for the 24 hours a week I was working. But then I realized that I was safeguarding her money for what? So that my brothers could inherit what was left? Now, I have caregivers come in 55 hours a week (I work 40) and am willing to bring people in on weekends when there is something I want to do.
So, while I do not regret taking Mom in, I regret the time I spent trying to do it all myself.
I'm so sorry it's turning out like this for you. To answer your question, I'm torn between 'no you must be joking' and 'yes but I'd do it all differently.' But overall we all need to have a fair trial run at it before deciding, and it's... Not Fair! :(