I have not been in touch for a while – I was busy! I am – unbelievable but true – moved. It was planned differently and yet it turned out otherwise. I can recommend such a thing to you all, it distracts wonderfully from MSA. Okay, I could have saved the stress, work, nerves and money. Due to all the stress, I have also decreased a bit in the last few months, I hope to train myself back to the old level now. What’s good is, I can get out and move around at my new place, it’s all flat far and wide. I’m just waiting for better weather now.
As I reported eight months ago, I moved into a living group, I was worried that being alone would eventually become soon a problem and the idea was very good. This has not changed, but it is the case that this living group was not what I had imagined. There were many ideas and plans, only as you also know, with MSA you don’t have so much time available.And I like to stick to guidelines and written rather than gut decisions.
The whole journey to get here was not easy, not emotionally and not financially, I lived in Munich for over 20 years. Friends I left there, my household I had to get rid of with a heavy heart (some of which I now have to buy again), my familiar surroundings, my doctors and therapists who already knew me… I had to leave all that.
All of this did not make the epidemic any easier, however Covid-19 was a welcome explanation for all the things that were not happening. As for me, this epidemic was a potential source of danger for me, on the trip from Bavaria to Hessen, all the encounters with strange people….
So that the same doesn’t happen to you as it did to me, I’ll write down what I should have paid more attention to. Yes, a move is best considered very well. What do you expect from it, what should become better, what can become worse and whether a move is at all necessary for an improvement. I know, the distress and fright is great after such a diagnosis and you would like to have someone “who knows a little”, you are frightened even shocked and scared, friends and relatives are overwhelmed, but to react later is much more complicated, and also more expensive than to pay some attention in advance.
– Always visit the chosen facility beforehand and don’t make the mistake of “blindly trusting”.
– Clarify all costs and make contracts in advance.
– Inquire whether a test housing is possible, and do this for at least one week.
– During the test housing look at what comes out of the kitchen and whether you like it.
– Make sure to what extent the facility is handicapped accessible – and not only wheelchair accessible. Can you move around independently with a walker, for example, are there steps, ramps and slopes? Are there handles?
– Is it possible to shower and use the toilet independently? Is there a risk of slipping or tripping? Is privacy respected?
– How many bathrooms/showers/toilets are there and how does this relate to the number of residents?
– Is it possible to leave the house? Are walks on its own possible? Or does this require companionship and planning? Is there a companion available if you need? Is it all spontaneous?
– Does one know the disease, or is it just another place where MSA is thought to be a bit of a balance disorder? Is medical staff on site – at least on certain days?
– How is an emergency handled? What if you have an inconvenient fall or choking, infection?
– Is the facility run by capable staff who don’t make basic mistakes, at least with commonly known symptoms of the illness?
– Are your concerns taken seriously or everything is “blamed on the illness”?
– Is heating/heat resolved? We know that MSA patients are generally colder than normal and hypothermia can lead to sepsis.
– Is the emergency team trained? Would be bad if in the event of an emergency the emergency physician hears about MSA for the first time.
– Is it solved and fixed in which hospital you want to go to and which you don’t?
– Is there an admission form where you can write down your medication schedule, other illnesses, allergies, likes and dislikes? Who will sort your medications according to which order and whose permission.
-Is there any training/education regarding the disease? If not live, at least online or in the form of reading material?
– How about the noise level? MSA patients are sensitive to noise; a children’s playground or construction site under the window would be inconvenient.
– Can the rooms be darkened? Light sensitivity is something we are all familiar with.
- Has all work on the facility been completed? Or are they in the planning stages? If things are planned, how certain and binding is a completion date?
- By whom can the other rooms used by all, be entered and are visitors generally announced? For whom are these rooms freely accessible?
- – Are there emergency plans in case of fire or similar? Are these plans tried and tested and do they work?
- – Is the facility subject to a law? Law can be annoying, but it is still better than doing things “just so” because someone thinks it is good. Frameworks and limits that are binding offer orientation.
- – Are there care services that can help you cope with everyday life?
- – Are there everyday activities, the possibility to use and promote one’s resources in a meaningful way? We know that a days can be long. People should like what they do. Is an exhibition/cinema/theater visit possible?
- – Are there trained therapists on site? Can therapy take place seamlessly? In appropriate rooms with appropriate accessories?
- – Does the facility have its own assistive devices such as a walker, shower chair; stand-up aid, etc. or do you have to rely on your own utensils.
- – Is there a transfer, also suitable for wheelchair users?
- – How are visitors catered for? What’s in it, a glass of water or a meal? Are they always accommodated in the rooms used by all (which then mean restrictions for the other residents) or in their own room or somewhere else? Do they always walk under their own windows?
- – Is it possible to talk to residents?
- – Does the facility work together with a social service and are the duties, who has to, should, may do what, regulated?
- If you have other ideas, please add it. Who still has specific questions, please write me an email.
- Now I am back in a “normal apartment”, again in the situation where I was before, let’s see how long I can continue so. I hope for a while, so that all the newly bought stuff will be worth it. What is pleasing, and in retrospect turned out, the social service that has previously also cared for me is very close here, I therefore have familiar faces around me.
- I plan my support according to a modular system. My caregiver remains the same as before, she is a gift for me and worth her weight in gold. No matter where I need to go, what I need to get, she takes care of it. She never forgets anything and she knows when to ask questions and when not to. She drives with me to doctor’s appointments and to offices. Or she goes to the post office for me, goes for a walk with me, drinks coffee, eats ice cream or sits and chats with me when I want. I would have needed such an assistant when I was still healthy… Ask at a social service of your choice. The care insurance supports it with 125 euros per month (in Germany).
- The caregiver also cleans your apartment if necessary. For me, my caregiver is almost too pity for that, I will look elsewhere and look for a cleaner. However again a person around me which I like to have that.
- Besides, I have helping people around me, they are the best thing that happened to me here!
- I have also purchased a home emergency call (DRK, Johanniter, Malteser, Caritas offer this, in Germany again), which is an additional sense of security.
- I also bought an Apple Watch (I am generally Apple user), the models from 4.0 have a fall detector. In case of a fall, if I don’t move for 60 seconds, the device calls 112 and sends my GPS coordinates. I think that’s good!
- I get food delivered, there are many canteens and restaurants.
- If it will be necessary, I will call nursing service for the morning/evening washing/dressing ceremony – they are not far here.
- I am not in my old home but I have many new, nice and helpful faces around me. If I have something, I have to call out loud. Only if this stupid disease would not be…