It’s raining today quite heavily. I was reminded that I no longer had transport by a car, in fact my transport arrangement has changed beyond recognition. Before I left, we would jump into the car in the rain and it was not an issue.
When I was with my husband we got in the car and went places. Shopping: jump in the car and travel to whichever shop or shopping centre we felt like at that time.
Now that I have chosen to live on my own my independence is different. I am no longer able to drive because of my Alzheimer’s and lack of attention. So I am now reduced back to public transport, buses, trains and walking.
Walking has to be measured. Is it a good day where my pain is bearable? Is the distance acheivable. Is there somewhere that I can sit down, have a drink and rest, before continuing.
Buses: I read the timetables, can I get from A to B by bus? Is my journey achievable?
Trains: Can I afford the ticket? How many times do I have to change trains – too many and it is too much for me to cope with. I need to write the journey down step by step, time by time, any diversion needs to be adjusted to, and workable.
Okay I know this sound plan-able, organised, sorted..but in reality it is done in panic and fear.
What if….? I can’t find the platform, get on the wrong train, not get off at the right station because my attention is on something else and I miss it?
These are real.
So now, I am unable to go places on a whim or places that are not on a bus or train route. I am one of the millions who are stuck within the boundaries on the limit public transport around me.
I miss my car. I miss getting in and driving to places…to anywhere.
Where am I going with this? I am living alone, I have no family or friends nearby so I guess I am reasonable isolated in my own world.
The other day I woke up and was happily going about my business when I had a phone call from my sister-in-law. What transpired is that I was very confused with what day it was, and how I managed to lose track of days. This wasn’t just not knowing what day it was but the confusion of not knowing or even thinking about how I could check it out.
So many people say to me that ‘I do that all the time” maybe even you are thinking it as you are reading this. But, until you ‘wake up’ in the middle of the day and not knowing what the day is, and are so confused that you are unable to work it out, then you will know how upsetting that is.
I realised that I need to put in place more strategies to help me live independently. I may need some help to make sure I can sort out my bills and I do not sort them out timely enough. I have bought a cork-board to pin paperwork to that I need to sort out. When I see my new Consultant at the Memory Clinic in a few weeks I will ask about how I can find help for say an hour a week.
Living alone has exposed some of the difficulties I experience on a day to day basis. Living with another person, even if they don’t want to they can soften the changes. Now the little things are showing up, and I have to work extra hard to cope on a daily basis. Still I am doing okay.
Handbagwarrior; verbal ramblings 
Giving you big hugs! I hope they will get you some help at the clinic.
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Thank you. I am hoping so.
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I hope you get the help you need.
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Thank you. I will find something somewhere.
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So sorry to hear of these little problems cropping up now. I deeply sympathise having some memory issues of my own. I know my memory issues are not the same as your Alzheimer’s memory issues, but I can at least, at this stage of your Alzheimer’s, feel your growing anxiety.
But as you say, it’s not necessarily Lack of memory that’s the problem (for you). It’s knowing how to look up or recover that information that is the growing problem. At least I know to turn my computer on 1st thing after I’m made my morning coffee, look at all the bookmarked sites (which are in order of importance) and go through each, one step at a time.
Then I open my gmail account and go through each item in the inbox. For a while I had an email I had sent to myself with “pay rent on or about the 27th’ in the subject line to help me remember.
But then you have to remember to turn your computer ON, and actually look at the list (in your case of Alzheimers). I suppose eventually, you will forget to look at lists or notice board. As to the date…..I have only just realised (after 3 years of owning a Mac Pro) that there is a calendar on the icon side of the screen which says ’13’ i.e. today’s date. Duh! It’s taken me all those years to see that.
That’s why I keep my life simple. I know you do too.
I remember when I sold my car and gave up driving in 2003. It took me ages to come to grips with the fact that if I missed something on my shopping list, I would have to make do until the next shopping trip. It was not worth the 2 hours round trip of waiting for one bus and then the connecting bus to get to the supermarket (and home again). Back in those days I was still working and had enough money to catch a taxi if something was really urgent, but not now.
This is how I got used to having boiling water on my cereal. I forgot my rice milk and didn’t have the energy to go back to the supermarket. I’ve been having boiling water for over a year now and have actually grown to like it. Beside it saves me $6 per week. Same with a multitude of other ‘essentials’. Things we used to consider ‘essential’ are being redefined and becoming obsolete.
I don’t have friends or family living close either. And now, I don’t have my wonderful neighbour who would ring or knock on my door if she didn’t see me every second day. She would help me when I was too sick to go out or shop.
I do so hope you are able to meet or make friends with someone who is understanding and can help you make the transition to this next stage in your life (and location) a little easier.
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OMG Vicki, I never realised that the calendar had the date on it also!!! Thank you for that 🙂 You are so perceptive and understand exactly what I am saying (albeit badly because it was late at night and I was tired but had to get it out of my system).
Thank you x
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Always get it out of your system, otherwise you end up not being able to sleep. I know as I did it all the time while working and even now, I get anxious over trivial things that create problems that healthy able bodied people take in their stride.
I sometimes write things on my PhotoBlog (to get them out of my system) and then next morning, re-read them and delete them as not being what I really wanted to say (or share).
Please keep sharing your thoughts as you never know who will read them. Someone in your position with Alzheimers OR, someone like me who has memory & chronic health problems who may be able to offer some suggestions that prove helpful.
(and so glad the date thing proved helpful).
Vicki
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Every time I read one of your posts, I see your stress increasing and wish so much that I could help you! At the same time, you always bring to mind Boris’s journey with Alzheimers. So often he didn’t discuss anything with me; in fact, this was more often than not — and I now feel certain that he had the same feelings you have. Except, that I’ve always been here. I repeat: your bravery brings me to my knees.
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Thank you Nancy. I too hid problems I was having at work for so long because I didn’t realize they were due to an illness, but somehow thought I was just ‘not very good at things’. When I look back and see all of the things I put in place to help me do my job I am amazed. I actually redesigned all the paperwork and systems to help me! Once I stopped lying to myself I felt calmer and less ‘stupid’.
Writing this helps me so much you will never know, it keeps my brain stimulated, and allows me to panic then let it go. Also I feel I have got to know some wonderful people across the world who care. So, thank you x 🙂
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Keep writing Gill. It’s a good outlet for your emotions. As our disease progresses we gradually lose all the freedoms we enjoyed as adults, driving being one of the biggest! You’re are a strong lady and have been through so much recently and you still keep going! Thanks, You’re quite an example.
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You too Paulan 🙂
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Again it saddens me to read this my friend and to be able to relate also, yet again. When they said I couldn’t drive ever again it was the hardest piece of my independence that I had lost. The comfort of a friend/family with you is another thing that’s truly hard to lose also. In the past few years after I was diagnosed, I started realizing all that we take for granted. It’s the little things that if were to be taken away from anyone, they would be lost. Independence is just the beginning. Then In our case, a rainy day, a “trip” … Can completely undo us. The panic sets in. The consequences we know could happen but others feel like their so far fetched. Well until they walk in our shoes, in this disease, they can’t understand those “consequences” are very real and a “simple” thing as changing a bus or train or even remembering where we are as the day progresses, can turn into an even worse scenario .. Being lost, scared, alone.. No way to get help because we don’t even know where we are or sometimes even where we live. I look forward to reading all your blogs and I appreciate every thought you have. I haven’t written in awhile. Things have been hard. I can’t seem to write down my thoughts anymore. How to phrase them, put into words, make them understandable. Another piece of me I’m losing. Then the anger comes and goes – what hasn’t been there in years because I’ve accepted the disease, but it’s back because I feel less and less of who I was and its so frustrating. I just want to be “normal” again. I’ve even lost the “fruits” of dementia. I see no good. I’m sorry. Meant to comment my love and support and end up being very depressing. Much love Gill and how your feeling is completely normal and I wish and pray everyday for a miracle. As one commented below, they, I or you, write, then we delete it or leave it in drafts, I do it all the time. I’ve lost my courage to write. Don’t you ever stop. You are such an inspiration to me. Thank you!!!
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Oh Mel my friend, my heart goes out to you and all our friends who live with this disease. We hide our fear for as long as we can from ourselves as much as from others. What you are saying here is so important for others to hear. You have put into words the emotional details that I miss out, I think because I am trying to maintain a positive life. I don’t know if it is the dementia but my real anger is slipping away being replaced with a numbness? Maybe it is just me dissociating from having this disease.
What you have written above makes perfect sense, and it is sad you have lost your courage to write the harsh realities of what it is like living with dementia. I wish I could sit with you and support you to write your anger and difficulties. I understand how you feel and send you my love and strength. I feel your love and support my friend x
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