Expert: Mary Gordon - 5/16/2010

Question
Hi Mary,
My mum is 59 years old and I am 19. She was diagnosed with Early onset Alzheimers disease 3 years ago. I am her main carer. It feels like the biggest uphill battle that cant be won. I dont know what to do. She cannot use the toaster, washing machine, light switches, forgets to eat, time and days of the week are irrelevant in her world, has trouble dressing, cannot remember what she did each day etc.
I hate that I feel like we have no relationship anymore. There's no connection between us because she doesnt understand stories that I tell her and never tells me anything. I use simple language with her and speak slower but I just cant engage her. It's like she doesnt care about anything.
How can I make the most of the time with her now? How can i communicate with her?
She gets so frustrated when i help her do anything. When I cook, clean, help her with her shoe laces, help her do simple things. I know she feels this way because its like I'm taking away her independance, but I have to step in.
I hate this so much. I mainly just wanted to have a whinge to you, because you know what I'm talking about. It's just so hard and so unfair. What do I do? I just want my mum back.

Thanks for your time.
Michelle

Answer
Hi Michelle, I know this is heartbreaking - and I know you know this is a relentlessly progressive disease and will get worse and worse.

Alzheimer's disease just isn't like any other illness - you are doing your grieving for her while she still lives, because in every way that matters, she is dying before you eyes, and you are losing the mother you need and love so much. I lost my mother to cancer when I was 17, and as devastating as that was, it wasn't as awful as what you are going through. My mother became very ill, but she was herself right to her last moments and knew what was happening. We looked after her as she was dying, but right to the end, she understood who we were and what was happening, and loved us for our efforts. She hated and resented her illness, and that it was necessary for her to have help, but she didn't resent us for what we had to do. She understood that it was necessary and from love. Your poor mum has lost that perspective.

I'm mum of three - who are now 19, 16 and 12 - and having been a motherless 19 year old, I know how very much you still need a mum at your age. You may be a young woman in body, but you still have so much growing up to do, and a huge burden is on you at a time when you need to spread your wings and figure out who you are. You still need the love and support of the person who can no longer guide you and help you into adulthood. My heart just breaks for you. I remember being so jealous of friends who still had their mums - and my grief extends to now, when I still wish I had a mum to talk to, to have seen my life unfold, and to love her grandchildren.

When you are a mum yourself, you will know that small children are often profoundly ungrateful. They don't realize they need help. They resent efforts to keep them safe, clean, fed and healthy. They don't really care if mum and dad have had a terrible day. They can't control themselves or realize that perhaps right now isn't the best time to be difficult. They don't want to listen to adult concerns or stories. They are profoundly self centered - and that is the way they are supposed to be when they are little. They are consumed with themselves and have no perspective, and as they grow and mature, they come to understand and appreciate the efforts that have gone into their care and nurture. That is what sustains parents - they know the child will bloom. In the case of dementia care, the opposite is true.

Your mum is being dismantled by her illness, and she is not doing any of this on purpose. She is doing the best she can with what her injured brain will allow. She can't see what a toll this has on those around her. She has limited self control. She has no self insight. She can't remember what happened in the past, and she can no longer anticipate the future. She is exactly like a small child living in the now. If she was your small child, you would make allowances for her, knowing this is a natural phase and that she would grow and mature, so your loving efforts would eventually be acknowledged. She may not even be completely clear on who you are. The illness tends to remove memories in reverse order, so she may think she is a young woman again, and have forgotten she had children. My mother in law (who had Alzheimer's) eventually came to believe I was her sister. She had forgotten she was ever married, started signing her maiden name, and continually asked where her parents were. She knew I was familiar, but since in her mind she was a teen or younger, it didn't occur to her she had a daughter in law.

I think you might be less frustrated if you can come to the point where you can see her as she is now - like a little one, who wants to do things but can't, who can't see danger, who gets frustrated and has tantrums when she is frustrated or thwarted - especially if she is tired, hungry or stressed. It won't make your grief less but it might allow you to accept what is. It isn't that she doesn't care anymore. It's more that she can't care anymore. All you can do is love her, pat, sooth, reassure, hug, divert, distract and comfort. That is the language she understands now. Her emotions are intact although her memories and ability to reason are not.

What I am worried about more than anything is you. What is the plan for going forward? I hope your family has one. Your mum will need 24/7 support and supervision, and that cannot be on you. She will be just like a 2 year old, and she won't be able to do anything for herself, or be on her own even for a short time.  That is too much for you to cope with. Your job is to love her and look out for her, but you need to look after yourself and be able to look ahead to your own life. Because she is relatively young and healthy other than her dementia, she may need heavy care for years - she will become incontinent, stop walking and talking, need to be fed, bathed, dressed.  You can't do this - it will be too much entirely. Given that you are starting to resent her, I think it already is too much already - and the adults in your life should know that. You need help with this - you have done more than anyone should expect a young woman to bear. Since it does get much more relentless from here, you need full time care for her, whether that be hired help in the home, or in a care facility. You may not be ready to consider that, but you do realize at some point, she won't really know where she is or who she is with, and will need the kind of special care and programs that are very hard to provide in a home environment. We were able to keep my mother in law in her apartment for a few years with all kinds of arranged help, but eventually she needed more supervision than we could manage - so she was in assisted living for two years, in a locked dementia ward for two years, and in a heavy care nursing unit for 2 years - and she was much older than your mum when she developed Alzheimer's - she was in her 70's. Not only did the facilities have special equipment and programs, they had fresh staff on shift every 8 hours who were not exhausted and frustrated and grieving, so they could be more patient and philosophical with her than we could always have managed.

Your mum loved you and the very last thing she would have wanted was to be a burden on you and have you start to break under the strain.  
You aren't whinging - you are hurting. It might be time to talk to your family and her health care team and figure out how you can be better supported going forward before you reach a breaking point. I'm thinking of you. Hang in there - she must have been a wonderful mother.

Mary G.