AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Expert: Mary Gordon Date: 5/13/2008 Subject: What's next
Question I have been reading your answers for several months and believe you are the one to seek information from. Mom is in later stage 6. Yet, like the lightbulb, sometimes she knows me, sometimes she doesn't. She can't identify her home or mine, and gets lost. Sometimes I'm "Mom" or her sister. She is losing control of her head, and her overall posture is really bad. Urinary and fecal control problems have only shown themselves four times in the past three months.
She is craving sweets and has a healthy appetite IF you set it in front of her. She constantly hallucinates, talking to people who aren't there, thinking TV personalities can see her and talk to her. She is a classic case in so many ways. She has cataracts, so first I wonder if we should have them removed. We are not sure if they are contributing to her problems with her environment and recognition.
We have excellent help, but the cost has now surpassed that if we found a NH for Mom. As long as it really matters to her and she is cognizant of NOT being in a NH, we want to keep her home-though her home now holds very little meaning to her. Other than the question about her eyes, I guess I would like to know when she would be able to make a somewhat easy transfer to a NH. My brother and I love our Mom and we want to be there for her. Yet both of us have been doing this for quite a while. We both have family that needs our attention and time, as well as spouses that have waited for these years to share life as a couple. We have good care, but especially for me, I make every moment with Mom special. It is exhausting and depressing.At the moment she enjoys my efforts, even though she may not remember it tomorrow. Honestly, I go all out to make each day a special event because I love her.
When I tell her I love her, she still says, "I know you do." The next thing she says will make no sense what so ever. She struggles and knows she can't find the right words. How can I possibly know when the time is right or NOT hurtful to Mom to select a NH. I would never want her last coherent thought to be-"She put me in a home." I have accepted where this is going, and sometimes find myself wishing that she was farther along. Then, I am so ashamed with myself. She gave up the past 25 years of her life caring for others. I'm not as strong as she was though I wish I were...
Answer Hi Sweetpea, back in the saddle now!!
I know this is so, so hard. The fluctuations in particular make you doubt your own perceptions of her mental abilities. It makes a person hope that their loved one is still intact in there, just trapped - and that makes you feel guilty that maybe you should be doing more, or soldiering on longer. The real truth is, she is likely more impaired, and on more fronts than even you can admit to yourself - you are probably giving her credit for thoughts and feelings she is not even be capable of.
With my mother in law, it got to the point where she would smile when she saw me, but I doubt she could have told anyone who I was. For awhile there, I was her sister - I presume because she couldn't figure out who else I might be, and she'd forgotten her sister was an elderly lady!! I suspect the truth was, I was just vaguely familiar at best, and at worst, a smiling stranger who paid attention to her, so was rewarded with a smile back. Its a phenomenon called agnosia. They lose the ability to recognize people, places and things, which explains a lot about their behavior. They can't recognize friends, neighbors or family members. They get lost in the neighborhood they've lived in for 60 years. Even if they are in their own home, things start to look odd to them, and they aren't really sure where they are.
My mother in law forgot entirely about her marital home of 50 years, and her marriage - once we showed her a picture of her late husband, and she asked who he was. When we told her it was her husband, she got upset about being married to a strange man and told us she'd have to get a divorce! It would be funny in a black way if it wasn't so starkly tragic.
When she talked about home (when she could still get a coherent phrase or two out), she was talking about her girlhood home. In her mind, it was still there, her parents were still there and her sisters, and she wanted to go there - not to our house, not to her house, but to a home and family long gone.
She really had no coherent clue where she was. When she was a bit better than your mom is now, she moved from a lovely assisted living place (where she was living for a short time) to a locked Alzheimer's ward, because they couldn't keep her safe in the first place (she would wander and get lost in the building in the middle of the night). Believe it or not, even though the facilities were totally different, she didn't really "get" that she had moved. The only comment she ever made was a vague mention of how they'd decorated the dining room.
I know its important to you that she be in a loving environment, but I'm willing to bet money, she's not really sure where she is, or why, or who you are - her brain can't really carry any coherent thought for more than a second or two. She has a very damaged brain, and everything is a jumbled swirl she can't make any sense out of. She can't tell what's real and what is not.
The muscular problems will get worse and worse - as the brain damage progresses, the brain loses its ability to control the body, so their coordination and sense of balance eventually goes. As I know you know, the incontinence will shortly be full time - not just an occasional event. I know it breaks your heart, but from here on in, the care gets heavier and heavier, and more and more relentless, and thankless. She will need more and more assistance with every aspect of her life, from dressing and eating, to every aspect of her personal hygiene. She will lose her ability to walk. She will not be able to talk at all beyond nonsense phrases. She will also lose her ability to chew and swallow, and as that is happening, she will need to be hand fed soft foods or thickened liquids. Its bleak - and it's downhill from this point - and I don't say that to be cruel.
Your job is to love her. That doesn't mean that you need to look after her in a home environment - your job is to make sure she's treated with dignity, given respectful care, and the best possible quality of life - in terms of her limited world, not the world she lived in before she got Alzheimer's. She can't have the kind of life you wish she could have, no matter what you do. Being clean, well fed, given opportunities for social stimulation and activities she might be able to participate in (even in a limited way), and kept happy, serene and comfortable - that is what it's all about for who she is right now, and who she is about to become. What is important to you, is no longer what matters to her. You can't try to see it through her eyes - either as who she is now, or who she was before Alzheimer's. You think she would have hated the idea of a care facility when she was well, and you can't let that idea stay with you. She is so different now than she was - she's no longer that person, and she needs such different things. I know its really hard to admit to yourself when the home environment is no longer necessarily the best option for everyone involved.
You do have to take into consideration the rest of your family as well as yourself. If caregiving is too much, no one wins because she needs you all healthy. She needs you not to see her as an emotional and physical drain on the psychological resources of the family.
That would be truly sad, and not what she would want.
Private homes really aren't set up for the needs of a person with advancing Alzheimer's. If you are having a struggle looking after her now, if its taking a toll on your mental, emotional and physical health - its time to look for placement. Give yourself permission. The decision point is the hardest point in the whole process. I absolutely heart and soul promise you, this will be much, much harder on you than on her. She will do fine. She will adapt, she may even thrive having more stimulation around her.
My mother in law was a very shy woman. She was very cultured, she was very retiring - a real home body. She was also intensely private. You can imagine our trepidations about putting her into assisted living and then the Alzheimer's ward. We couldn't imagine her liking any part of it - but we fell into the trap of assuming she was the same person she'd been. Everything we thought we knew about her, her personality, her likes and dislikes, all that was based on her intact brain, which was no longer there. She did fine. She was as happy as was possible for her to be, and every effort to enrich her days was made by staff and by family.
You are going to find that it gets easier when you make the decision to find a placement for her, when you start to take action by checking out the options and finding the right facility. You will be sad, you will grieve, but you will know its the right thing to do for everyone involved - and that is particularly true if you are pleased with the quality of the facility and feel its a good fit for both her and you. And when you take her over, and leave her there, the staff can help you through this. They have seen this 100's of times, so they know what to do to assist your mom, and your family through the transition.
What many people go through in the aftermath is that it takes a while to get your life back. You are currently under much more stress than you probably realize, since its been building up gradually - it is as though you are being squished by a weight that just gets heavier and heavier. You are carrying a huge burden of worry. When you look back at this, you will wonder how you did it, and how you managed to carry on so long. It is likely to be a tremendous relief to you not not to have to think about her safety and well being 24/7. Once you see that she is doing well, and being well looked after, it will be HUGE. You will probably do nothing but feel like sleeping, as you recover.
You are a wonderful daughter, and you need to put guilt away. You have done the best you could, when a home environment may have meant something to her. I know you wish with all your heart that this hadn't happened to her, and to everyone it has impacted.
Thinking of you. I know you will feel better when you start to explore the care options for this next stage of her journey through Alzheimer's. You are doing the right thing. Be kind to yourself.
